AN AUSTRALIAN GOVERNMENT INITIATIVEALZHEIMER’S AUSTRALIA EARLY STAGE DEMENTIASUPPORT AND RESPITE PROJECTFINAL REPORT ON THE NATIONAL EVALUATIONJANUARY, 2005

Michael Bird*, Tanya Caldwell*, Jerome Maller** and Ailsa Korten*Aged Care Evaluation Unit
Greater Southern Area Mental Health Service
PO Box 1845
Queanbeyan, NSW 2620
Ph (02) 6124 9875, fax (02) 6299 6363**Centre for Mental Health Research
Australian National University
Canberra

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CONTENTS

EXECUTIVE SUMMARY ..................................................................................... 3
ACKNOWLEDGEMENTS .................................................................................... 4
BACKGROUND...................................................................................................... 5
Methodological issues ............................................................................................ 6
Central aims of the evaluation ................................................................................ 7
METHODS .............................................................................................................. 7
Ethics ..................................................................................................................... 7
Study design........................................................................................................... 7
Procedures ............................................................................................................. 7
Measures ................................................................................................................ 8
Medication use ....................................................................................................... 8
STATISTICAL METHODS ..................................................................................10
The main sample ...................................................................................................10
The interviewer measure .......................................................................................10'Lateness': The timing of the completion of questionnaires ....................................11
Statistical methods for the wait-list control sample ................................................12
THE SAMPLE........................................................................................................12
The response rate for the main sample participants ................................................12
The response rate for the wait-list control participants ...........................................15
Socio-demographic characteristics of the main sample ..........................................15
FINDINGS FOR THE PEOPLE WITH MEMORY LOSS .................................18
What problems does memory loss cause for you? ..................................................18
Depression ............................................................................................................19
Medication use ......................................................................................................21
Measures of cognitive ability.................................................................................22
FINDINGS FOR CARERS/SUPPORTERS OF PEOPLE WITH MEMORYLOSS .......................................................................................................................24
General mental health............................................................................................24
Depression ............................................................................................................25
Changed behaviours ..............................................................................................26
Stress from changed behaviours (listed at the start of group) over time ..................29
Stress from behaviours per person (using all behaviours listed) .............................29
Making plans for the future ...................................................................................31
Service use ............................................................................................................32
Medication use ......................................................................................................33
Caring as an enriching experience .........................................................................35

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SATISFACTION AND COMMENTS ABOUT THE GROUPS ..........................35
People with memory loss: Satisfaction with the groups .........................................36
People with memory loss: Comments on the groups ..............................................36
Carers/supporters: Satisfaction with the groups .....................................................39
Important aspects for carers/how it made a difference 15 months after the group ...40
Carers'/supporters' suggested improvements 15 months after the groups finished ..42DISCUSSION .........................................................................................................44
Main findings ........................................................................................................44
Methodological considerations and potential limitations of the study.....................46
Comment on the program ......................................................................................48
Clinical implications .............................................................................................49
Conclusions ..........................................................................................................50
REFERENCES .......................................................................................................51

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Executive summary
In 2000, the Australian Government Department of Health and Ageing began funding
Alzheimer’s Australia to run time-limited groups in every Australian State andTerritory. The groups offer support, information, education and problem-solving forpeople with early stage dementia, together with their carers/family members or
supporters. The groups are part of the innovative Early Stage Dementia Support andRespite Project, presented as the Living with Memory Loss (LWML) program.
Evaluation of the effectiveness of such a project presents many problems. This is best
illustrated by the fact that 30 years of research, even with traditional carer-alonegroups, consistently reports high levels of participant satisfaction but there is rarely
improvement in outcome measures over time. The methodology for the current
evaluation was devised in consultation with Alzheimer’s Australia staff who present
the LWML program. The methods involved administering a multi-facetted
questionnaire just before the start of the LWML groups, at the end of the program,and then three months and 15 months later. Questionnaires were completed by bothcarers/supporters and people with memory loss, using a method which maximised thechances that participants were able to process the material. A sub-sample ofparticipants (wait-list control group) filled in two ‘pre-group’ questionnaires before
the program started. These questionnaires were used to determine whether any
improvements in the main sample could be attributed to the groups, or to change
which would have occurred anyway.
There is sufficient evidence to conclude that what is quite a low-cost and brief
intervention has a significant clinical impact, even though some of the effects were
not apparent until the three month follow-up. People with memory loss and theircarers/supporters were highly satisfied with the groups. Both frequently stated thatwhat they learned, being able to talk freely and openly with others, and feeling thatthey were not alone were the most helpful and important aspects of the groups.
Qualitative comments by the people with memory loss, including descriptions of theirexperiences, are presented in this report. They demonstrate that people with early
dementia retain considerable insight, confirming one of the basic premises of the
LWML program.
The findings of this study extend over and above satisfaction ratings. For participants
with memory loss there was a significant improvement in depressive symptoms. A
decline in cognitive ability (found for the sample as a whole at the three monthevaluation) and increased medication use (for those who were clinically depressed
when they started the group) were integrally related to the decline in depressive
symptoms.
For carers/supporters, there was a significant decline in stress caused by changed
behaviours and an increase in how enriched they were by the caring experience.
Furthermore, these results were not due to changes in cognitive or functional status,
nor to increased use of health services after the group. The improvements describedabove were evident at the end of the group and at the three month follow-up.
At the three month evaluation, there was also a significant improvement incarer/supporter mental health and in the likelihood of making legal/financial plans forthe future. This latter finding could be due to the passage of time. Whether or not3

improvements found at three months would have occurred without attending thegroups could not be assessed because the control group did not cover such a long time
period.
The only effect remaining at the 15 month follow-up was alleviation of depressive
symptoms in a somewhat select sub-sample of people with memory loss, whom wewere able to interview at that point. We were not able to adjust for all possible
confounders because of the small number of participants. Despite the loss of mosteffects at 15 months and the long passage of time, carers/supporters remained positive
about the groups. The majority endorsed the program strongly, both for other people
with memory loss and their carers/supporters.
Regardless, the findings up to three months are important in their own right. The
evaluation found improvements during a time period that reflect the early stages ofdementia. Assisting people living with early stage dementia is the primary goal of the
program. The results are noteworthy because changes in validated outcome measuresover time are comparatively rare in the support group literature. They are also
clinically significant because the variables included in this study are predictive ofother negative events, including physical morbidity, inappropriate medication use, andinstitutionalisation. The findings strongly suggest that the content of the LWML
groups is well-chosen and well-delivered. They also strongly suggest that the groups
deserve to continue.

Acknowledgements
We would like to sincerely thank and acknowledge the carers/supporters and people
with memory loss from the program. Participating in this evaluation has meant
spending a lot of time answering extremely personal questions.
We would like to thank Anna Sarre and Glenys Badger who have both been national
co-ordinators of the program during the evaluation. Their enthusiasm andcommunication with Alzheimer’s Australia staff has substantially encouraged andbenefited the project.
We also want to acknowledge the efforts of the State co-ordinators and staff who haveworked on this evaluation. They have contributed at many levels, giving detailed
discussion about the content of the questionnaire, administering questionnaires, andanswering follow-up queries. They have been unfailingly helpful and enthusiastic.
We are indebted to Professor Henry Brodaty, who suggested entering all potential
confounders into the analysis together. Many thanks to Tony Jorm and Keith Dear
who gave invaluable help with the statistical methods. Thanks to Keith Dear
specifically for his advice about time varying covariates, and the syntax for theClinical Dementia Rating scale.
Finally, we acknowledge the role of the Australian Government in funding andsupporting this project. The foresight and willingness required to fund innovative
projects means that Australia is at the forefront of countries running national groupprograms which include not only carers, but people with memory loss.

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Background
From its inception the core business of Alzheimer’s Australia has been to support
family members caring for people with memory loss, often in group settings. Morerecently, several regional associations began running groups for people with memory
loss themselves. In 2000, the Australian Government Department of Health andAgeing funded Alzheimer’s Australia to present standardised Living with Memory
Loss (LWML) programs in every State and Territory of Australia. Alzheimer’s
Australia staff facilitate these LWML programs. They provide support groups forpeople with early stage memory loss who still retain some insight into theirdifficulties, together with their family carers/supporters. The groups are normally run
once a week, for 6-8 weeks, and people with memory loss and their carers/supporters
meet both separately and together. The groups provide information and advice about arange of key issues, including describing what dementia is, how to manage thelabyrinth of available services, drug and treatment options, stress management
techniques, communication skills, and strategies for coping with changed behaviour.
Emotional and social support are also a primary component, with the groups
providing the opportunity for carers/supporters and people with memory loss to share
their experiences with others going through similar situations, and with understanding
staff.
It was a condition of funding that the effectiveness of the LWML groups beindependently evaluated. This was a crucial issue. Nearly three decades of research
has at best produced equivocal findings on the effectiveness of support groups for
informal carers, let alone for people with dementia themselves. Although manystudies show that participants are highly satisfied with support groups (Brodaty et al.
2000), it is rare for movement to be found on measures which would indicate
significant improvement in quality of life, for example mental health. The few studies
which do show effects on variables other than satisfaction tend to have much more
focussed and intensive programs than support groups. An example is the classic study
by Brodaty and colleagues, where carers undertook an intensive two-week residential
program (eg. Brodaty and Peters 1991). Effects were still apparent several years later(Brodaty et al. 1993).
Those who present support groups have no doubt they assist carers, and the fact thatpeople continue to attend could be taken as a marker of effectiveness. Nevertheless,repeated failure to produce data showing improvement in measures other thansatisfaction has led to some scepticism in the literature, best encapsulated in thejournal article title: Support groups for informal caregivers don’t work! Refocus thegroups or the evaluations (Lavole 1995). That is, because the quality of research on
support group outcomes is generally poor, it is unknown whether inadequate
measurement or inadequate programs, or both, are responsible for equivocal findings
about their effectiveness (Cooke et al. 2001; Pusey and Richards 2001). It was against
this background that we planned the evaluation of Alzheimer’s Australia’s Early
Stage Dementia Support and Respite Project.

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Methodological issues
In order to evaluate the LWML program, a number of logistical and methodologicalproblems needed to be solved.
Firstly, research has generally relied upon informant report because of methodologicaldifficulties interviewing people with memory loss. Using carers as informants
assumes that they will be able to accurately report on the internal life of those theycare for. While this method is widely used it is not always valid, nor does it respect
the rights, opinions and experiences of people with memory loss (Clare et al. 2002).
In the current study, it was considered vital to include the views of people withmemory loss in the evaluation, because they are an integral part of the program.
However, this population commonly has difficulties processing and storing incoming
information in memory. They tend to have equal difficulty retrieving informationfrom memory even when they have processed it (Bird 2001). See the Procedures
section (overleaf) for a description of how questions were presented to people withmemory loss in this study.
Secondly, in order to show that support groups have an impact, it is necessary todemonstrate that any improvements or benefits would not have occurred in the normal
course of events, without attending the LWML groups. In simple research terms thiswould involve randomly assigning people with memory loss and theircarers/supporters to a control group who do not attend the groups. This control groupwould be followed over time to see if improvements also occur. However, it wasneither ethical nor permissible for Alzheimer’s Australia to randomly allocate people
with memory loss and their carers/supporters to treatment or no-treatment groups.
Another way of determining what happens to people without attending the program
would be to randomly allocate participants to wait for a pre-determined time, taking
measures at two points before they start the groups. However, randomisation was notpossible because it was not acceptable to Alzheimer’s Australia to make people wait,
but also because it was often not logistically possible. Accordingly we have used thebest compromise possible: naturalistic wait-list controls. That is, people who wereassessed as suitable for a LWML group but then had to wait three weeks or more
before it started. For example, wait-list control participants accepted into the groups
may have had to wait a month until the next scheduled group was due to commence.
Thirdly, the evaluation required close collaboration between the research team andAlzheimer’s Australia staff, who are generally passionate about the well-being ofpeople with memory loss and their carers/supporters. However, few of these clinicians
had research experience, and some did not see the value of research and were anxious
about it. In particular, they wanted to protect their clients from questions that might be
distressing (eg. asking about suicide in mood scales). The final form of the assessment
instrument therefore contains some compromises as a result of a number of meetings
with staff from Alzheimer’s Australia and many email exchanges soliciting their
input. We were aware that adding the evaluation to an already substantial clinical load
would be a considerable demand. It is most appropriate here to acknowledge thewonderful efforts of LWML program coordinators and group facilitators in helping us
carry out this research. We are enormously grateful (see also acknowledgements).

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Central aims of the evaluation
Given the methodological problems, the central aim was to conduct a rigorous
assessment of the effectiveness of the LWML groups within the constraints of thesituation, balancing the rights of participants, the concerns of Alzheimer’s Australia
staff, and the need not to compromise the goals of the research. We wanted to cover
multiple aspects of the dementia experience while using, wherever possible, validated
scales with proven sensitivity for this population. We needed to demonstrate that any
results (whether positive or negative) obtained were valid, and not due tomethodological deficiencies.

Methods
Ethics
Ethical approval for this project was granted by the Human Ethics Committee of theAustralian National University (Protocol no 2001/102), and South Western Sydney
Health Service (Project no 03/059).
Study design
This is a repeated measure, wait-list control study, utilising one main study group anda control group. For the main study group, measures were to be given before thegroups started, when they finished, and at two follow-up points, approximately threemonths and 15 months later.
The control group was wait-listed. That is, it was a sample of participants who were
accepted into the LWML program but generally waited more than three weeks before
it started. These participants completed the research measures when first enrolled, andthen just before the group actually started. The control condition was designed toevaluate whether or not change occurs over time without participating in a group.
Procedures
Participants were informed about the evaluation upon enrolling in the LWML
program. They were assured that if they did not want to participate it would not affecttheir involvement with the groups or with Alzheimer’s Australia and that they could
withdraw from the study at any time. Consent forms were filled in by all willing
participants.
Carers/supporters completed their questionnaire alone and sealed it in an addressedenvelope, so Alzheimer’s Australia staff could not see their answers.
The procedure for participants with memory loss was designed to address the
problems inherent in interviewing this population. Firstly, the carer/supporter was
asked all factual questions such as age. For questions involving the subjective
experience of people with memory loss, a standardised method was devised tomaximise the chance that participants would process the questions and maintain themin memory long enough to consider them. It capitalises on the fact that the ability to7read words normally declines quite late in dementia, and that reading and considering
text induces processing in this population (Bird and Luszcz 1993).
Each question was expressed as a short statement, for example: I FEEL MISERABLE
AND SAD (from the Leeds Depression Scale). The interviewer held up a card withthe statement in large letters and asked the person with memory loss to read it aloud.
Immediately afterwards, while still holding up the statement, the interviewer asked:“Is that true?” If the respondent unequivocally said “yes” or “no”, their response was
accepted. If their answer was in any way ambiguous, standardised follow-up questions
were asked (with the statement still held in front of them). This enabled a moredetailed understanding of how the person with memory loss was feeling, rather thanjust Yes/No. It also allowed responses to be graded from 1 to 4, consistent with the
Likert scoring of the Leeds Scale.
Alzheimer's Australia staff administered the questionnaire to participants because
dementia specific communication skills were required. A video tape demonstrating
the procedure was made by the research team to ensure that it was done asconsistently as possible.
Measures
Separate questionnaires were designed for the person with memory loss and theircarer/supporter. A literature search, clinical experience, and input from thosepresenting the LWML program produced a multi-facetted instrument which covers asmuch as possible of the memory loss experience, and also gives valid clinical andscientific outcome measures. Validated outcome measures are, the Beck Depression
Inventory (BDI), the 12 question version of the General Health Questionnaire using
the ‘Chronic’ scoring method (GHQ: Donath 2001; Goldberg and Hillier 1979), theLeeds Self Assessment of Depression General Scale (Snaith et al. 1976), and theCarer Stress Scale associated with challenging behaviour (Bird et al. 2002). The
questionnaire also included an item asking whether plans for the future had beenmade. For the end of group assessment, participants were asked to rate theirsatisfaction with the LWML program.
Validated explanatory measures included the Abbreviated Mental Test (MacKenzie etal. 1996), the Clock Drawing Test (Sunderland et al. 1989), the Clinical Dementia
Rating (Morris 1993) and an adaptation of the Guidelines for the Rating of Awareness
Deficits (Verhey et al. 1995; Verhey et al. 1993). Other explanatory measures
included items on service and medication use.
Medication use
It was essential to examine psychotropic and cholinesterase inhibitor use by thepeople with memory loss to determine whether it changed over the evaluation period
and, if so, whether such changes could explain any improvements found in theevaluation. We asked carers/supporters to record the medications and dose per day
that people with memory loss were taking across all time periods. However, it is not a
simple matter to investigate the amount of medication taken and change over time.
There were three main problems.

8First, problems arise when attempting to compare the dose across various brands ofantidepressants, antipsychotics, anticonvulsants and benzodiazepines. To give an
example, a person may have changed the brand, while staying on the same class of
medication. That is, they may have changed from Cipramil to Zoloft - two different
types of antidepressants. Particular issues complicate the conversion of different
medications into common equivalencies, including the plethora of brand names given
to similar and often identical chemicals, and the variation in opinion as to the exact
equivalency that should be given to a particular chemical. Issues such as half-lives
further cloud this domain of enquiry.
We therefore calculated drug equivalencies by converting antipsychotics tochlorpromazine, antidepressants to amitriptyline, and benzodiazepines to diazepam
using established dosage equivalencies published in the Victorian Drug Use Advisory
Committee's “Psychotropic Therapeutic Guidelines” (2000; 1996/1997). Various
other sources were also used (Preston 2002; Preston and Johnson 2002; Preston et al.
2002). Note that Avanza (Mirtazapine - a tetracyclic antidepressant), Venlafaxine(Efexor – an SNRI antidepressant), and Luvox/Faverin (Fluvoxam. Maleate – an SSRI
antidepressant) could not be converted into amitriptyline equivalency doses, andSeroquel (Quetiapine Fumarate – a new type antipsychotic) could not be converted
into chlorpromazine dose. In these instances, the person was recorded as taking theclass of drug, but the actual amount was recorded as missing. Rivotril (Clonazepam)
is described as an anticonvulsant but is more often prescribed as a benzodiazepine andhence was converted to diazepam equivalency doses. Different types ofanticonvulsant cannot be converted into equivalents. However, only four participants
were taking an anticonvulsant at any point in the evaluation and nobody changed
brands.
Second, it was not meaningful to express the average dose taken because large
standard deviations result from including people not on medications that are taken inlarge amounts (ie milligrams). We therefore used the drug equivalent dosages togenerate a ‘change’ variable identifying people whose use of a class of drug (egantidepressants) increased, did not change or decreased. Being able to investigate
increases and decreases in medication use is much more sensitive than looking at
whether or not a person is taking a medication.
Third, information about medications was often missing, particularly about the dosetaken. Using a ‘change’ variable meant that we could code a medication as increased
if someone was not previously taking a drug but started taking it at a later time period,
even though the dose was missing. Similarly when a person stopped taking a drug, thedrug was coded as reduced. Missing data was therefore limited to situations when an
individual did not answer the question, or they stated that the person was taking thedrug, but did not clearly indicate how much and/or how often.
People who were taking a medication as needed (PRN) were recorded as taking the
drug but the dose was recorded as missing. This was only relevant for
benzodiazepines.

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Statistical methods
The main sample
STATA (version 7) was used to conduct most of the statistical analysis. For
continuous outcome variables, XT regression was used to evaluate main effects ofchange across measurement points. For binary outcome measures (eg making futureplans), logistic regression was used to evaluate main effects of change overmeasurement periods. The logistic regression analysis was clustered by theindividual’s identification number. Outcomes (such as depression) were used as
dependent variables and a measure defining the evaluation periods (start of group, endof group, three and 15 month follow-ups) was used as the independent variable.
We used statistical methods which allowed us to determine whether a range ofcovariates, individually or combined, could account for change in outcome measures.
Covariates were simultaneously used as independent variables in the analysis. The
standard errors were adjusted to take into account the repeated measures design. Thatis, the analysis was clustered by the participant’s identification number. The ‘xi’
procedure available in STATA was used to compare the start of group to the othertime periods. Adjusted mean scores were generated for each analysis.
Covariates for the carers/supporters included lateness (described overleaf), service
use, medication use and level of cognitive ability (both referring to the person withmemory loss), and whether or not they continued on to further LWML groups. For thepeople with memory loss, covariates included lateness, activities of daily living(ADLs), insight, level of cognitive ability, medication use, whether they went on toattend further LWML groups, and an interviewer measure (described below).
The interviewer measure
As previously noted, Alzheimer's Australia staff interviewed the person with memory
loss. The possibility that the results could be influenced by having the same staff
member conduct the start of group and follow-up interviews needed to be considered.
Consequently, a variable identifying situations where the start of group interviewer
conducted subsequent interviews was generated. Table 1 shows that more than half ofthe end of group evaluations, and more than a third of the three month and 15 monthfollow-up evaluations were conducted by the start of group interviewer. Accordingly
this measure was used as a covariate in the analysis investigating outcomes for the
person with memory loss.

Table 1: The number (and proportion) of end of group and follow-up questionnaires
conducted by the start of group interviewer.
EG
FU1
FU2
n (%)
45 (54%)30 (36%)
17 (35%)
Missing (n)443EG=End of group, FU1=3 month follow-up, FU2= 15 month follow-up

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'Lateness': The timing of the completion of questionnaires
Our aim was to have questionnaires filled in upon completion of the group, and three
and 15 months after the groups finished. However, practical difficulties meant that
there was considerable variation in timing. Table 2 shows how overdue thequestionnaires were (mean number of days) at the end of group, three month and 15
month follow-ups. On average the end of group and 15 month follow-up
questionnaires were less than two weeks late, and the follow-up questionnaires wereless than four weeks late (as indicated by the mean scores). However, the large
standard deviations reflect considerable variance. For example, the end of group
questionnaires incorporated responses over a month after the groups finished.

Table 2: Mean (and standard deviation) number of days late: the timing of the completion of
the end of the group, three month and 15 month follow-up questionnaires for the main
sample.
Carer/supporter
Person with memory loss
EG

13.8 (13.9), n=87

10.6 (10.7), n=84FU127.6 (31.6), n=87

26.6 (33.4), n=84FU2

10.3 (88.6), n=58

14.4 (93.9), n=52

*EG=End of group, FU1=3 month follow-up, FU2= 15 month follow-up

Consequently, we generated a variable we have labelled 'lateness' which defines eachquestionnaire as being early, on time, late, or very late. Table 3 shows the definitionof the lateness categories for each time period. We included this ‘lateness’ measure asa covariate in all statistical analyses presented in this report unless otherwise stated.
The analysis therefore statistically adjusts for the variation in the timing of thecompletion of questionnaires.

Table 3: Definition of ‘lateness’ categories for the start of group, end of group andfollow-ups.
Early
On timeLate
Very late
SG
More than 14
14 days or lessNA
NA
days before
before groups
groups started
startedEG
NA
within 14 days of 15 to 27 days
28 days or moregroups finishingafter groups
after end offinished
groupsFU1More than 14
14 days before or 15 to 60 days
61 days or moredays before due
after the due date after due dateafter due date
date
FU2
More than 60
60 days before or 30 to 120 days
121 days or moredays before the
29 days after due after due dateafter due datedue date
date
SG=Start of group, EG=End of group, FU1=3 month follow-up, FU2= 15 month follow-up

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Statistical methods for the wait-list control sample
For the wait-list control sample, repeated measures analysis of variance was used toinvestigate the significance of any differences between the mean scores on continuous
measures from two pre-group questionnaires. A lateness measure was simultaneously
used as a covariate in this analysis. This lateness measure was 42 minus the number ofdays between the two pre-group questionnaires. Including this measure in the analysis
means that the time between the two pre-group questionnaires (for the wait-list
control group) parallels the time between the start and end of the groups for the main
sample, which was usually 6-8 weeks.
When describing the wait-list control analysis the following terminology will be used.
For the wait-list control group, "time 1" is the first pre-group questionnaire and "time2" is the second pre-group questionnaire. For the main sample, "time 1" is the start ofgroup questionnaire and "time 2" is the end of group questionnaire.
Changes occurring between time 1 and time 2 in the control sample (who had notattended the groups) could theoretically explain changes occurring in the main sample(who had attended the groups). Therefore the outcome measures for the wait-list andmain sample participants at time 2 were used as response variables in an analysis ofvariance, while group (wait-list vs main sample) outcome scores at time 1 and thelateness measure were entered as factors/covariates. This enabled us to investigate
whether the wait-list and main sample time 2 scores were significantly different after
adjusting for lateness and time 1 scores. That is, we could determine whether changes
in the main sample could have occurred without attending the groups.

The sample
The response rate for the main sample participants
The participants for the main sample were recruited from groups across New South
Wales, Victoria, South Australia, Queensland, Tasmania, and Western Australia. The
main sample groups were run from December 2001 through to December 2002. Data
collection was concluded in late July 2004.
Figure 1 is a flow chart showing the number of participants who completed the start ofgroup questionnaires. This figure shows that 87 carers/supporters and 84 participants
with memory loss had valid data through to the three month evaluation. Between thestart of the group and the three month follow-up, 14% of carers/supporters and 18% ofparticipants with memory loss withdrew from the evaluation, and/or were lost tofollow-up. Overall, 24% of carers/supporters and 31% of participants with memory
loss who filled in a questionnaire at the start of group were not included in the threemonth follow-up sample analysis given in this report. We also have data at the 15
month follow-up for 58 carers/supporters (57% of those with valid questionnaires up
to the end of the groups), and 52 (49%) participants with memory loss.

12Figure 1: The number of participants in the main sample who started the evaluation, did not complete the groups, were lost to follow-up, andcompleted valid questionnaires through to follow-up.
Complete start of group
questionnaires
114 Carers/supporters
120 memory loss

Did not complete
program**
6 carers/supporters
7 participants withmemory loss

Invalid SGquestionnaires
6 carers/supporters
7 participants withmemory loss

Refusals/loss to follow-up
15 carers/supporters
22 participants withmemory loss

Valid SG, EG & FU*questionnaires
87 carers/supporters
84 participants withmemory loss

Valid FU2* questionnaires
58 carers/supporters
52 participants withmemory loss

*SG=Start of group, EG=End of group, FU1=3 month follow-up, FU2= 15 month follow-up**Refers to participants who only attended one or two sessions or who withdrew from the groups

13

The left box shows those who only attended one or two sessions. This does notnecessarily indicate that they “dropped out” or were unsatisfied with the LWML
groups. For example, some participants only planned to attend a few specific sessions
or may have left because of illness. Some participants filled out start of group
questionnaires after the groups had already started. These participants were excluded(shown as ‘invalid’ in Figure 1) from the study, as their responses may have been be
influenced by exposure to the first few sessions.
Table 4: The proportion of people attending 41 LWML programs, who participated in theevaluation (main sample) through to the three month follow-up.
Person with
State
Carers/supporters
memory loss
NSW
44.7%
44.8%
SA
45.5%
48.3%
VIC
27.9%
29.7%
TAS
50.0%
60.0%
WA
20.9%
25.6%
QLD
33.3%
22.2%

Table 4 shows that participants came from 339 carers/supporters and 231 people withmemory loss who attended 41 groups from six Australian States during theevaluation, though participation rates varied across States, ranging from 22.2% to60%.

Figure 2: Participants in the wait-list control sample who did or did not complete valid
pre and start of group evaluations, or who did not complete the groups.
Completed PG*
questionnaires
37 carers/supporters
38 participants withmemory loss

Completed SGquestionnaires
35 carers/supporters
35 participants withmemory loss

Valid PG & SGquestionnaires
32 carers/supporters
32 participants withmemory loss

Did not complete SGquestionnaires
2 carers/supporters
3 participants withmemory loss

Invalid SGquestionnaires
3 carers/supporters
3 participants withmemory loss

*PG=Pre-group, SG=Start of group**Refers to participants who only attended one or two sessions or who withdrew from the groups

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The response rate for the wait-list control participants
Figure 2 shows wait-list control participants, those who completed two pre-group
questionnaires. Two carers/supporters and two participants with memory loss
completed the start of group questionnaires after the groups had started and could not
be used in the analysis for reasons described in the previous section. The present
study incorporates into the analysis the 32 wait-list carers/supporters and participants
with memory loss who filled in valid questionnaires.
Socio-demographic characteristics of the main sample
This section describes the socio-demographic characteristics of the main sample. The
aim of this report was to evaluate the efficacy of the LWML programs, not to report
overall service demographics. Accordingly, this section describes only thecharacteristics of the participants who completed valid questionnaires up to threemonth follow-up. This is the sample for whom we later present findings on the main
outcome measures. Table 5 shows the breakdown of participants by State. A larger
proportion of participants came from groups run in New South Wales, Victoria andSouth Australia.
Table 5: The number (and percent) of participants in the main sample by State.
Person with
State
Carer/supporter
memory loss
NSW
38 (43.7%)
30 (35.7%)SA
15 (17.2%)
14 (16.7%)
VIC
17 (19.5%)
19 (22.6%)
TAS
7 (8.0%)6 (7.1%)WA
9 (10.3%)
11 (13.1%)
QLD
1 (1.1%)4 (4.8%)
total
87
84

Table 6 (overleaf) shows a breakdown of the carers/supporters by sex, age, educationand their relationship to the person with memory loss. This table shows that a larger
proportion of carers/supporters (70.1%) were female. Female participants also tended
to be younger, and analysis of variance indicated that the difference was significant(p<.001). This age difference is largely due to the participation of daughters (20% of
female carers/supporters) in the evaluation. By contrast, no sons of a person withmemory loss completed the evaluation.
Most carers/supporters attended the LWML groups with a spouse who had memory
loss, and resided together in the general community when they started the groups. A
small number of the female carers/supporters had current employment (10 spouses
and 9 daughters/sisters of the person with memory loss). Most participants hadcompleted some post high school education and reported good or excellent physicalhealth.

15

Table 6: Socio-demographic characteristics of the carers/supporters at the start of thegroup (for the main sample).
Male
FemaleSex
26 (29.9%)
61 (70.1%)
Age
<50
0
10 (16.4%)
50-64
2 (7.7%)19 (31.1%)
65-74
9 (34.6%)
17 (27.9%)75+
15 (57.7%)
15 (24.6%)
Relationship to person with memory loss
SpouseSon/daughter
FriendSibling
Residence
In general community
Unit in retirement village
Living with the person with memory loss
Yes
No
Currently employed
Yes
No
Post school education (including
trade/university/college etc)
None
1-2 years
3+ years
Missing
Physical health
Poor
Fair
Good
Excellent16

25 (96.2%)
1 (3.8%)45 (73.8%)
12 (19.7%)
2 (3.3%)2 (3.3%)23 (88.5%)
3 (11.5%)

55 (90.2%)
6 (9.8%)25 (96.2%)
1 (3.8%)48 (78.7%)
13 (21.3%)

1 (3.8%)25 (92.3%)

19 (31.1%)
42 (68.9%)

5 (19.2%)
18 (69.2%)
3 (11.5%)

14 (23.0%)
22 (36.1%)
22 (36.1%)
3 (4.9%)1 (3.8%)6 (23.1%)
18 (69.2%)
1 (3.8%)1 (1.6%)13 (21.3%)
31 (50.8%)
16 (26.2%)

Table 7 shows the socio-demographic characteristics of the participants with memory
loss. Men and women were fairly equally represented, and tended to be a similar age.
They were largely living in private residences in the community and a large
proportion had a post-high school qualification. Most participants had a diagnosis of
Alzheimer’s disease or dementia unspecified. Most carers/supporters reported that theparticipants with memory loss had good or fair physical health.
Table 7: Socio-demographic characteristics of the participants with memory loss at thestart of the group (for the main sample).
Male
FemaleSex
44 (52.4%)
40 (47.6%)
Age
<50
0
0
50-64
10 (22.7%)
6 (15.0%)
65-74
12 (27.3%)
9 (22.5%)75+
22 (50.0%)25 (62.5%)
Residence
At home, in general community
Unit in a retirement village
HostelMissing
Physical health
Poor
Fair
Good
ExcellentMissing
Education
No post school education
University/college
Trade
Other
MissingDiagnosis
Alzheimer’s disease
Dementia unspecified/memory loss
Vascular/stroke related, or multi
infarct dementia
No diagnosis
Missing17

37 (84.1%)
4 (9.1%)3 (6.8%)32 (80.0%)
4 (10.0%)
1 (2.5%)3 (7.5%)2 (4.5%)8 (18.2%)
19 (43.2%)
12 (27.3%)
3 (6.8%)10 (25.0%)
23 (57.5%)
4 (10.0%)
3 (7.5%)15 (34.1%)
12 (27.3%)
8 (18.2%)
3 (6.8%)6 (13.6%)

21 (52.5%)
9 (22.5%)
3 (7.5%)2 (5%)
5 (12.5%)

25 (56.8%)
7 (15.9%)

29 (72.5%)
6 (15.0%)

5 (11.4%)

1 (2.5%)3 (6.8%)4 (9.1%)

4(10%)

Findings for the people with memory loss
What problems does memory loss cause for you?
Participants with memory loss were asked, “What problems does having memory loss
cause for you?” Interviewers wrote down the response of the people with memory
loss. At the start of the group a response was recorded for 78 (93%) participants.
Only three people could not answer the question when asked. For instance, one
participant responded, I don’t know about that. Three people stated that they didn’thave, or could not think of, any memory problems.
The most frequent problems mentioned by participants (n=46, 59%) related topractical skills and/or tasks, such as problems doing household chores, driving,forgetting to do things, losing items, being slow, or not being able to do hobbies.
Eighteen (23%) participants specifically mentioned forgetting names of places or
people.
Distressing emotions were frequently mentioned by participants (n=28, 36%).
Examples are: frustration, anger, disbelief, anxiety, panic, feeling sad, useless,confused, vulnerable, upset, embarrassed, afraid, stupid, annoyed, and loss ofconfidence.
Anxiety, this feeling of anxiety overwhelms me. I don’t feel as confident
when I am anxious.
I feel useless…..
I hate having to ask people to repeat things for me. I’m afraid of not
being able to remember, of getting worse, of becoming senile. I just go
blank sometimes and then panic and feel so stupid.
Communication, relationships and concern for others were also common concerns(n=14, 18%).
Problems with all the family. I can’t be told anything. I know I am being
difficult. Then I feel sad about the arguments. I think I am right most of
the time but I am never right, I was never like it. If don’t get my way I goon like I don’t know what…
I have to make lists. My daughter and son have more or less taken over.
They won’t even let me do the shopping. I’m not being ungrateful, but I
would like to do some things, some times.
I find that other people don’t know how to handle it, that sometimes
makes it a bit more awkward in a group of people.
My wife worries about it plenty…...

18Orientation (to place, date or time) problems were mentioned by nine people (12%).
Confusion in shopping centres and open parkland, I get lost easily in newenvironments…
I got lost going to my sister in law’s at a roundabout, I asked a couple ofbuilders for help…...
Nine people (12%) also responded with a comment meaning that they needed to rely
on others.
Feeling uncomfortable, not being able to remember….I don’t find it a big
problem because I always have my husband around .
One person responded:
It bloody affects everything….
Depression
Table 8 shows the mean scores on the Leeds Depression Scale (adjusted for lateness)across evaluation periods for the main sample participants with memory loss. This
table shows that there was no significant difference in depression scores at the end of
the groups, but on average participants were less depressed at the three month followup.
Table 8 also shows the mean depression scores after simultaneously including ‘theinterviewer’ variable previously described. Depression scores for the group as a wholeremained significantly lower at the three month follow-up after making theseadjustments. That is, being interviewed by the same person did not account for thedecreased depression symptoms for the person with memory loss.
However, Table 8 also shows that improvements were statistically accounted for by anumber of time varying covariates, level of dementia (CDR), level of capacity inactivities in daily living, and insight. That is, taking into account participants' capacity
in the above areas over time statistically accounted for the improvement in depression
symptoms at the three month follow-up. We cannot therefore attribute the average
improvement in depression symptoms to group attendance. Declining cognitive andpractical capacity might be expected to increase depressive symptoms, but loss of
insight might mask this.
Analysis of variance indicated that there was no difference between the intervention(mean 3.91, se .30, n=84) and the control group (mean 4.08, se .50, n=32) indepression scores at time 2 after adjusting for symptoms at time 1 and lateness(p=.772).

19

Table 8: Adjusted mean (and se) scores on the Leeds depression scale at the start of group, end of group,
three month and 15 month evaluation periods.
Group and sample
SG se
EG se
FU1 SeFU2 seWait-list control†
3.75 .61
3.88 .65
Main sample
TO 15 MONTHS, n= 51

3.91 .42

4.02 .42

TO 3 MONTHS, n=84
4.27 .35
Adjusted for: same interviewer 4.27 .37
Adjusted for: insight, adls, CDR 4.27 .34

4.06 .33
4.45 .35
4.52 .32

Clinical sub-sample (Leeds>6)
TO 15 MONTHS, n=109.20 .87
Adjusted for: same interviewer 9.20 .94

6.74 .84
6.68 .92**

9.52 .69
9.52 .69

6.85 .65
7.61 .72***

5.13 .70
6.18 .78*****

9.52 .77
9.52 .86

7.58 .69
8.24 .77*

5.72 .72
6.52 .86*****

9.52 .88

8.22 .84

TO 3 MONTHS, n=20
Adjusted for: CDR, insight adls
continuing in monthly LWML
group
Adjusted for: same interviewer
Adjusted for: use of (yes/no)
antidepressants andcholinesterase inhibitors
Adjusted for: change inantidepressants andcholinesterase inhibitors

3.76 .45
3.14 .36
3.42 .36
3.58 .34***

3.76 1.0
4.00 1.0******

6.84 .98

SG=Start of group, EG=End of group, FU1=3 month follow-up, FU2= 15 month follow-up†The data for the wait-list control is adjusted to represent a time period (42 days) parallel to the time between startingand finishing the group. These two measures are both pre-group and indicate change that would have occurredanyway, whilst not attending the program.
* p<.05, **p<.01, ***p<001, comparing the start of group with other evaluation periods

A cut-off (6/7) was used to identify participants with levels of depression likely to beof clinical significance (Snaith et al. 1976). About a quarter of participants (24%) hada clinical level of depressive symptoms at the start of the group. In this clinical subsample there was a significant reduction in symptoms at the end of the group, which
was still evident at the three month follow-up. These findings were also not accounted
for by cognitive ability, insight and activities of daily living or continuing on toparticipate in other LWML groups.
In the clinical sub-sample, there was significant improvement in depressive symptoms
at the end of the group and at the three month follow-up after adjusting for theinterviewer bias described previously. Further, amongst the 10 participants in thissub-sample from whom we were able to obtain data after 15 months, symptoms werestill significantly lower more than a year after they finished the groups. Therefore
possible bias resulting from the interviewer conducting both interviews cannot
account for the reduction in depression found for the people with memory loss.
The possibility that medication changes could account for the improvement indepression symptoms for the people with memory loss also needed to be investigated.

20

We specifically investigated the role of antidepressants for obvious reasons andcholinesterase inhibitors because, if effective, a remission in cognitive decline might
be expected to lift mood.
We included measures identifying whether or not participants were taking
antidepressants and cholinesterase inhibitors (at each time period) as covariates in the
XT regression analysis of the clinical sub-sample. The use of these drugs statisticallyaccounted for the reduction in depression at the end of the group (p=.154) but not at
the three month follow-up (p=.007). However, including the more sensitive “change”
medication variable in the analysis statistically accounted for the reduction in
depressive symptoms at the end of the group (p=.252) and the three month follow-up(p=.051).
The wait-list sample was too small to determine whether change would have occurred
over time in a clinical sub-sample.
Medication use
We were interested in investigating the use of medications over time. As describedabove, they were a key confounding variable, but they are also a possible outcome ofattending the groups. This section describes medication use over the evaluation
periods.
Table 9 shows the proportion of participants with memory loss in the evaluation who
were taking antidepressants and cholinesterase inhibitors, and the number ofparticipants whose use increased, stayed the same or decreased.
Logistic regression was used to determine whether there were increased odds oftaking antidepressants or cholinesterase inhibitors at the end of the group and at thethree month follow-up. The use of antidepressants (OR=2.18, se .83, p=.040) andcholinesterase inhibitors (OR=1.62, se .32, p=.013) was more likely at the end of thegroup. However, the odds were not significantly different at the three month followup compared to the start of the group for both antidepressants (OR=4.26, se 3.38,
p=.064) or cholinesterase inhibitors (OR=1.62, se .49, P=.110).

21

Table 9: The use of antidepressants and cholinesterase inhibitors by participants withmemory loss over the evaluation period.
Medication and sample
Antidepressants
TO FU1 No. on drug
No. missing
TO FU2: No. on drug
No. missing

SG

EG

FU1

29/73 (39.7%)
11
15/48 (31.3%)
3

36/77 (46.8%)
7
17/48 (35.4%)
135/75 (46.7%)
8

Change relative to SG (n)Decrease
No change
Increase
No. missing

-

1
59
5
19

1
56
7
20

54/73 (74.0%)
1138/48 (79.2%)

61/77 (79.2%)
738/48 (79.2%)

60/76 (79.0%)
8Cholinesterase inhibitors
TO FU1: No. on drug
No. missing
TO FU2: No. on drug
No. missing

4

FU2

15/45 (33.3%)
734/45 (75.6%)

Change relative to SG (n)Decrease2
3
No change
59
56
Increase
9
12
No missing
14
13
SG=Start of group, EG=End of group, FU1=3 month follow-up, FU2= 15 month follow-up

Given that use of these medications had significantly increased by the end of thegroup, and that changes in medication use accounted for depression in the clinicalsub-sample, it is likely that the groups had an effect on medication use and that this inturn was associated with a reduction in depressive symptoms.
Measures of cognitive ability
The insight of participants was measured on a scale from 0 to 4, where 0 represented
no recognition of having memory problems and 4 represented unprompted,
spontaneous mention of having memory problems.
Cognitive ability was assessed using the clock drawing test. Level of dementia wasassessed using the Clinical Dementia Rating scale (CDR) with administration slightly
modified, as necessary, to assist carers in answering the questions. It is important tonote that this item represents the abilities of the person with memory loss as perceived
by the carer/supporter. The items cover capacity/impairment in the domains ofmemory, orientation, judgement and problems solving, community affairs, home andhobbies and personal care. For each question, a participant is assigned a score of 0
(none), 0.5 (questionable), 1 (mild), 2 (moderate) or 3 (severe). CDR scores were
calculated using a scoring method devised by Gelb and St. Laurent (1993). The scoreis based on calculating the median of the six questions, but places an emphasis on theimportance of memory, which is considered the primary question.

22

Table 10 shows the mean scores for participants on the cognitive measures.
Participants with memory loss only showed a significant decline on the CDR after 15months. In contrast, there was no change over time on the insight or the clock drawing
items. This could reflect selective loss to follow-up in that those who stayed in the
study to 15 months were the people who did not experience marked cognitive decline
and who retained insight. However, given that the carers/supporters reported that thepeople with memory loss participants had deteriorated cognitively, the findings may
simply indicate that the clock item is less sensitive to change. A change in the natureof behaviours (reported later) also indicates that there had been deterioration.
Table 10: Mean scores (and standard errors) on various cognitive measures over the evaluation
period for the main sample.
Measure and sample
SG se
EG se
FU1 seFU2 seInsight
TO 15 MONTHS, n= 50
2.67 .19
2.61 .19
2.70 .20
2.69 .13
2.79 .15
TO 3 MONTHS, n=81
2.71 .14
Clock ♣TO 15 MONTHS, n=51
TO 3 MONTHS, N=84

7.69 .40
7.03 .36

7.91 .40
7.12 .36

CDR (carer rated)♣ ♣TO 15 MONTHS (not.80 .05.86 .06.81 .07.87 .04.88 .07.90 .05.99 .04.90 .06.90 .05.95 .06-

6.83 .43

1.09 .09***

1.06 .08**

adjusted for lateness), n=47

TO 15 MONTHS
TO 3 MONTHS (not**adjusted for lateness), n=78

TO 3 MONTHS

SG=Start of group, EG=End of group, FU1=3 month follow-up, FU2= 15 month follow-up♣The clock drawing item was not included in the three month follow-up questionnaire.
♣♣ 0= none, .5=uncertain, 1=mild, 2=moderate 3=severe* p<.05, **p<.01, ***p<001, comparing the start of group with other evaluation periods

23Findings for carers/supporters of people with memory loss
General mental health
The GHQ has become one of the main questionnaires for measuring non-psychotic
mental illness in the community (Donath 2001). In the current study, the 12 question
form of the GHQ (using the chronic scoring) showed good internal consistency at thestart of the group (Chronbach’s Alpha=.86), confirming that it was a meaningful scale
for this sample.
Table 11 shows mean mental health scores at each period for participants in the main
sample and in the sample completing questionnaires at the end of group and 15 monthfollow-up. A significant improvement was evident in general mental health in themain sample at three month follow-up, but not at the end of the groups.
Donath (2001) investigated the GHQ (using the chronic scoring method) in Australiansamples and found that a threshold of 3/4 was optimal to identify participants withmental illness. Table 11 shows the mean scores for a sub-sample of participants
scoring above this cut-off at the start of the group. The mean scores for this subsample were significantly lower at three months. Table 11 also shows that adjustingfor potentially confounding variables (service use, CDR –level of dementia, attending
monthly LWML sessions post group) only makes a minimal difference to the meanscores.
There was no significant difference in general mental health of participants between
the start of group and the 15 month follow-up in the main sample as a whole or in theclinical sub-sample. That is, on average the mean scores were the same as the levels
obtained at the start of the groups.
For the wait-list control sample, there was no significant change in the GHQ between
the first questionnaire (mean 4.06, se .41) and the start of group questionnaire (mean3.72, se .45) (n=32, p=.120). There was also no difference in symptoms between thewait-list control group (mean 4.04, se .41, n=32) and the intervention sample (mean4.32, se .24) after adjusting for symptoms at time 1 and the lateness of the second
questionnaire (p=.573). This means that there was no difference between the wait-list
and main sample in movement on the GHQ between time 1 and time 2.
However, the change in GHQ scores was not apparent until three-month follow-up.
The mean length between questionnaires for the wait-list sample was 42 days, roughly
the length of the LWML groups. The wait-list results therefore only enable us to draw
conclusions about changes in the main sample which had occurred by the end of thegroups. The improvement in mental health scores is worth drawing attention to, but
we cannot state unequivocally that it is not due simply to the passage of time. Overall,
the results on the GHQ, while significant, must be treated with caution.

24

Table 11: The General Health Questionnaire mean scores (and standard errors) across evaluation
periods for the carers/supporters of people with memory loss.
Group and sample
Wait list control†, n= 32

SG
4.06

se
.41

EG
3.72

se
.45

Main sample
TO 15 MONTHS, n=57

4.42

.39

4.20

.39

4.78
4.78

.35
.35

4.50
4.39

.34
.34

6.31

.45

5.81

.45

TO 3 MONTHS, n=84
Adjusted for: service use,
CDR, continued on tomonthly LWML groups
Clinical sub-sample:(C-GHQ > 3)
TO 15 MONTHS, 31

FU1

3.86
3.87

se

.36
.35

FU2

se

4.07

.40

5.62

.48

**
**

TO 3 MONTHS, n=52
6.39 .43
5.95 .43
5.05 .43**
Adjusted for: service use,
CDR, continued on to
6.39 .43
5.88 .42
5.12 .43**
monthly LWML groups
SG=Start of group, EG=End of group, FU1=3 month follow-up, FU2= 15 month follow-up†The data for the wait-list control is adjusted to represent a time period (42 days) parallel to the time between
starting and finishing the group. These two measures are both pre-group and indicate change that would haveoccurred anyway, whilst not attending the program.
* p<.05, **p<.01, ***p<001, comparing the start of group with other evaluation periods

Depression
The Beck Depression Inventory showed good internal consistency at the start of thegroup (Chronbach’s Alpha =.88). For the main sample, there was no significant
association between BDI scores and the measurement period when the questionnaires
were completed. Mean scores and standard errors are shown in Table 12.
Scogin et al. (1988) showed that a cut-off greater than or equal to 4 on the BDI
adequately identified clinical cases of depression in a sample of older (>60) adults.
This cut-off was used to determine participants likely to have a clinical level ofdepression before they started the LWML program. Table 12 shows that depression
symptoms were not significantly associated with the measurement period in this subsample. However, there was some indication of significant improvement in depressive
symptoms at the end of the group, although this was not maintained through tofollow-up.
XT regression was also used to look at the mean depression scores acrossmeasurement periods. There was no significant change from the start of the group to
the end of the group or the three month follow-up in terms of depression symptoms.
That is, BDI scores did not change significantly over time. This applied equally to a
sub-sample reporting clinically significant levels of symptoms (n=29).
For the wait list control sample, there was no significant change on the BDI between
the start (mean 2.72, se .51) and the end (mean 3.14, se .55) of the 42 day period(n=29, p=.437). Univariate analysis of variance was used to determine whether the25

pattern of association over time was different for the wait-list and intervention
samples on the BDI. There was no difference in depression symptoms at time 2
between the intervention sample (3.42, se .26) and the wait-list control group (3.54, se.43; p=.827).
For the 15 month follow-up, there was no association between depression andmeasurement periods in the main sample as a whole However, there was an indicationin the clinical sample that those participants (exactly half) who went on to participate
in the 15 month evaluation were less depressed by the end of the LWML groups thanat baseline. It is possible that participants who improved were more likely toparticipate at 15 months but this is speculative.

Table 12: Beck Depression Inventory mean scores (and standard errors) for the carers/supporters acrossthe evaluation periods.
Group and sample

SG

se

EG

se

Wait-list controls†, n=29

2.72

.51

3.14

.55

Main sample
TO 15 MONTHS, n=48
TO 3 MONTHS, n= 75

3.63
3.64

.52
.53

2.98
3.49

.53
.52

FU1

se

3.80

.55

FU2

se

4.19

.55

Clinical sub-sample(BDI> 3)
TO 15 MONTHS, n=18
7.18 .84
5.80 .85*
5.97 .86
TO 3 MONTHS, n=29
7.01 1.04
5.89 1.02
7.82 1.08
SG=Start of group, EG=End of group, FU1=3 month follow-up, FU2= 15 month follow-up†The data for the wait-list control is adjusted to represent a time period (42 days) parallel to the time between
starting and finishing the group. These two measures are both pre-group and indicate change that would haveoccurred anyway, whilst not attending the program.
* p<.05, **p<.01, ***p<001, comparing the start of group with other evaluation periods

Changed behaviours
Carers/supporters were asked at baseline about behaviour change and given examples
of common behaviours in early dementia which often cause stress to those exposed tothem. They were asked to nominate up to four such behaviours and asked to rate thedegree of stress each caused them (on a scale from 0=no stress to 5=extreme stress).
At the end of group and in the three month follow-up questionnaires, they were
reminded of the behaviours they had reported at baseline and asked to again rate thedegree of stress they caused. This measure has excellent test-retest reliability overtime (Bird et al. 2002).
At 15 month follow-up we expected the behaviours to have changed somewhat, so
carers were asked the question in the same way as the start of group questionnaire;that is, they were not reminded of the behaviours they had reported earlier.
Before the groups started carers/supporters (in the main sample) identified 213
behaviours (2.4 behaviours per person) that were causing them difficulty and thenrated how stressed they felt. Carers were also given the opportunity to record new
behaviours that were causing them stress at all follow-up time periods. At the end of26

the group 279 behaviours (3.2 per person) were listed, and at the three month followup 345 behaviours (4.0 per person) were identified by participants
Table 13 shows how carers responded to this question at the start of the group,
roughly classified into behaviour or symptom themes. Some carers listed multiple,
conceptually different behaviours as one behaviour; others listed the same behaviour
several times as different behaviours. For this reason, Table 13 ranks behaviours inorder of frequency per person, though some distinct behaviours were described
consistently enough to provide some idea of the number of carers reporting them. For
example, at the start of the group 18 carers (21%) of those answering this question
reported repetitive questions as occurring; 6 (7%) reported apathy or withdrawal, andone (1%) reported incontinence.
Table 13 demonstrates that some carers made no distinction between direct symptoms
of dementia, for example aphasia or forgetfulness, and BPSD (eg., aggression). Therewas some consistency over time in the manifestations of dementia which were
stressful (for example aggressive outbursts and repetitive questions) but it is clear thatsome frequencies had changed. This may be because certain behaviours which areunlikely to change have become so commonplace as to barely rate a mention, forexample misplacing objects - ranked fifth at the start of the group, and fourteenth 15
months later. It may equally be that other behaviours or symptoms are more salient as
the disease progresses. For example, inability to recognize family members is notpresent at start of the group but fifth in frequency of carers reporting it as a source ofstress 15 months later.

27

Table 13: Changed behaviours listed as stressful by carers/supporters at the start of thegroup. Behaviours are ranked in order of frequency of occurrence at the start of group(SG) and 15 month follow-up (FU2).
Rank Order
Behaviour/manifestation of dementia
SG
FU2
1 Angry outbursts/verbal aggression/mood swings
1
1
2 Repetitive questions
2
3
3 Misplacing/losing objects
314
4 Communication problems-receptive/expressive aphasia 1
4
4
5 Rejection of help/reminders 2
519
6 Lowered standards of tidiness (including clothing)
626
7 Apathy/loss interest in activity/withdrawal
614
8 Memory problems/forgetting things
62
9 Repetitive speech other than questions
98
10 Inconvenient behaviour 3
98
11 Anxiety/obsessive anxiety about specific things4
11
19
12 Socially inappropriate (including sexual) behaviour
118
13 General irritability/intolerance (without outbursts)
11
8
14 Lowered standards of personal hygiene 514
8
15 Unable to carry out simple tasks
14
5
16 Slowness/lack of urgency or increased urgency
14
19
17 Sleep problems/disturbed diurnal rhythms
175
18 Saying things which are not true/confabulation
17
19
19 Impaired planning of tasks or priorities
17
8
20 Seeking reassurance through shadowing/frequent
17
14
telephoning etc
21 Frustration/distress when unable to accomplish tasks
21
19
22 Increased dependence not otherwise specified
21
14
23 Suspicious/jealous
21
19
24 Getting lost24
19
25 Depressive symptoms including frequent crying
24
14
26 Incontinence/Loss of toileting skills
24
27
27 Dangerous behaviour 624
828 Miscellaneous behaviours and irritations 7
28
28
29 Miscellaneous other direct symptoms of dementia 82929
30 Violence
026
31 Visual agnosia (mostly failure to recognise family)
0
5
1Includes reading and/or writing
Usually when person with memory loss insists on trying to do tasks they can no longer accomplish
3
For example: hoarding rubbish, leaving car lights on, mixing dirty and clean laundry4
For example: leaving the gas on, being left alone, money
5
For example: failure to wash, wearing same underwear for weeks
6
For example: Leaving house unlocked, not eating, leaving dog locked in car in summer
7
A diverse group. Examples include: ‘selfishness’, being impervious to logic, ‘being right all the time’,asking to come home (nursing home resident at 15 month follow-up)
8(Other than aphasia and memory). Includes: confusion, gait disturbance, spatial disorientation
2

28

Stress from changed behaviours (listed at the start of group) over time
We investigated behaviours and symptoms listed at the start of the group, todetermine whether there was any change over time in how stressful carers foundthem. Table 14 shows that carers were significantly less stressed at the end of thegroup and this decrease in stress was maintained at the three month follow-up. These
results were still significant after taking into account service use, the CDR, andwhether they went on to attend at least one monthly LWML post-group session andthe use of psychotropic medications and cholinesterase inhibitors (by the person withmemory loss).
For the wait-list control participants, 74 behaviours were named at time 1 and thenfollowed up at time 2. Repeated measures analysis showed no change in the stressassociated with these behaviours over the mean 42 day period (adjusted for late or
early questionnaires) between time 1 (mean 2.87, se .13) and time 2, (mean 2.69, se.14; p=.179). Univariate analysis of variance indicated that at time 2 the mainintervention group had significantly lower mean stress caused by behaviours
identified at time 2 (1.93, se .15) than the wait-list control group (2.60, se .15) after
adjusting for lateness and stress at time 1 (p<.001). The wait-list control sample is of
relevance here because change in the intervention sample had occurred by the end of
the groups. The findings indicate that the improvement in the intervention groupwould not have happened without attending the LWML groups.
Stress from behaviours per person (using all behaviours listed)
We also looked at the average level of stress for participants, across all behaviours
reported. This means that any new behaviours identified by carers/supporters at latertime points as difficult to handle were incorporated in the analysis. Table 14 also
shows the average stress per carer/supporter associated with these behaviours. In themain sample carers/supporters were less stressed by the end of the group and this wasmaintained at the three month follow-up. This finding was significant after adjustingfor service use, medication use (by the person with memory loss), level of dementia,
and whether or not they attended at least one monthly post-LWML group session.
However, at the 15 month follow-up there was no significant change on this measurecompared to the start of the group.
The wait-list control sample findings support the argument that this improvement wasa result of attending the groups. Repeated measures analysis of variance was used toinvestigate the change over time, in mean stress levels across all behaviours listed byparticipants in the control group (n=30). There was no difference between the stresswait-list participants reported between completing the first questionnaire (mean 2.79,
se .20) and the start of group questionnaire (mean 2.54, se .19, p=.105).
The main sample participants (mean 1.98, se=0.11) reported significantly lower stressscores than the wait-list sample (mean 2.48, se=.19) at time 2 after adjusting for thelateness of the interviews (p=.035). This analysis indicates that overall stress was
significantly lower at the end of the groups than at the start for the main sample, andthat the wait-list control group did not experience the same reduction.

29

Table 14: Mean (and standard error) stress associated with changed behaviours across the evaluation periods. Means stress scores are given per
carer/supporter and for behaviours identified as stressful just before the start of the groups.
STRESS♣ FROM BEHAVIOURS IDENTIFIED BEFORE THE
START OF GROUP AND THEN FOLLOWED-UP OVER TIME
Wait-list control† 74 behaviours,

SG
2.87

se
.13

EG
2.69

se
.14

2.73
2.73
2.73

.12
.12
.12

1.87
1.88
1.94

.11
.11
.11

2.73

.12

1.98

.12

MEAN BEHAVIOUR STRESS♣ PER PERSON
Wait-list control†

2.79

.20

2.54

.19

Main sample
TO 15 MONTHS, n= 51

2.72

.15

1.98

.15

Main sample
TO 3 MONTHS, n=209 behaviours, 81 participants
Adjusted for: service use, cdr, continued on to monthly LWML groups
Adjusted for: service use, cdr, continued on to later LWML groups, use(yes/no) of antipsychotic, antidepressant, cholinesterase inhibitor,
benzodiazepine, anticonvulsant medications for person with memory loss
Adjusted for: service use, cdr, continued on to later LWML groups, change
in dosage of antipsychotic, antidepressant, cholinesterase inhibitor,
benzodiazepine, anticonvulsant medications for person with memory loss

FU1

se

***
***
***

1.82
1.84
1.88

.12
.12
.12

***
***
***

***

1.95

.13

***

***

FU2

se

2.60

.16

TO 3 MONTHS, n=81
2.63 .13
1.96 .13***
2.04 .14**
Adjusted for: service use, cdr, continued on to later LWML groups
2.63 .13
2.00 .13***
2.04 .13**
Adjusted for: service use, cdr, continued on to later LWML groups, use
2.63 .14
2.06 .13***
2.06 .13**(yes/no) of antipsychotic, antidepressant, cholinesterase inhibitor,
benzodiazepine, anticonvulsant medications for person with memory loss
Adjusted for: service use, cdr, continued on to later LWML groups, change
2.63 .14
2.03 .14**
2.07 .14**
in dosage of antipsychotic, antidepressant, cholinesterase inhibitor,
benzodiazepine, anticonvulsant medications for person with memory loss
SG=Start of group, EG=End of group, FU1=3 month follow-up, FU2= 15 month follow-up♣
on a scale from 0=no stress to 5=extreme stress†The data for the wait-list control is adjusted to represent a time period (42 days) parallel to the time between starting and finishing the group. These two measures are bothpre-group and indicate change that would have occurred anyway, whilst not attending the program.
* p<.05, **p<.01, ***p<001, comparing the start of group with other evaluation periods

30Because of the way the question was constructed (carers were asked to rate stressassociated with the behaviours they had reported at baseline), it was not possible todetermine whether the reduction in stress occurred because the behaviour had ceased
or diminished, and/or because carers had more understanding of it. In either case adecrease in stress is an excellent outcome, because stress caused by changed
behaviour is a major reason for family members giving up and surrendering care toresidential facilities (Morriss et al. 1996).
Making plans for the futureParticipants were asked, “Have you made financial and/or legal plans for the future incase the memory loss of the person you care for or support gets worse?” Table 15
shows the proportion of carers/supporters who responded, “Yes we have.” at the startof the group, the end of the group and at the follow-ups. For the main sample there
was no difference in the likelihood of carers/supporters responding, "Yes we have." atthe end of the group. They were, however, more likely to have made plans at threemonth follow-up.
There was increased likelihood of making plans at the 15 month follow-up comparedto just before the start of the group, evident prior to adjusting for the lateness of theinterview. However, adjusting for "lateness" accounted for the increase in thelikelihood of making plans for the future. This suggests that the passing of time isstrongly related to making plans, and we cannot directly attribute any change to thegroups (particularly because we have no control group with comparable data oversuch a long stretch of time).

Table 15: The proportion and odds ratios (comparing the start of group to other time periods) ofmaking legal or financial plans for the future across evaluation periods.
Group and sample
Wait-list†, n=32

SG
60.0%

se

EG se
68.6%

Main sample
TO 15 MONTHS n=58 (%, se)Odds ratios (unadjusted)
Odds ratios adjusted forlateness

62.1%
1
1

.06
-

63.8% .06
1.08 .29.98 .30

FU1

se

FU2

se

81.0% .05
2.61 1.09
2.35 1.17

TO 3 MONTHS n=87 (%, se)
59.8%
66.7%
77.0%
Odds ratios adjusted for
1 1.52 .39
2.29 .89*
Lateness
SG=Start of group, EG=End of group, FU1=3 month follow-up, FU2= 15 month follow-up†The data for the wait-list control is adjusted to represent a time period (42 days) parallel to the time between
starting and finishing the group. These two measures are both pre-group and indicate change that would haveoccurred anyway, whilst not attending the program.
* p<.05, **p<.01, ***p<001, comparing the start of group with other evaluation periods

31*For the wait-list control participants, the future plans measure at the start of group wasentered as the dependent variable in a logistic regression, with group, lateness andfuture plans at the first questionnaire they completed entered as independent
variables/covariates. The odds (OR=0.71, se .80) of having made future plans at thetime they did their second questionnaire were not significantly different for the main
sample than the control group after adjusting for lateness and having made plans attime 1 (p=.590). Therefore there was no difference in the likelihood of making plansbetween the sample who attended the LWML group and a sample who did not.
Service use
Carers/supporters were asked to indicate the number of times in the last two months
they had used the following services: GP, support group (other than the LWML
group), individual counselling, telephone support, day respite or activity centre,
respite in their own home, and residential respite. For each evaluation period, we
calculated the average level of use of GP, support services, respite services and home
help services (0=did not use, 1=monthly or less and 2=two to three times a month ormore). In the main sample, Table 16 shows that there was generally no significant
change over time after adjusting for lateness. At the end of group support services
were less frequently used, but this is probably related to the end of the weekly LWML
groups.

Table 16: Mean level (and standard error) of service use♣ for the main sample across evaluation
periods.
Services and sample
SG se
EG se
FU1 seFU2 seGeneral Practitioners
TO 15 MONTHS, n=53
1.14 .07
1.22 .07
1.04 .08
TO 3 MONTHS, n=84
1.14 .06
1.20 .06
1.10 .06
Support services
TO 15 MONTHS, n=51
TO 3 MONTHS, n=81

.51
.61

.09
.07

.26
.38

.08
.07

Respite services
TO 15 MONTHS, n=51
TO 3 MONTHS, 81

.18
.22

.04
.07

.21
.23

Home help
TO 15 MONTHS, n=51
TO 3 MONTHS, n=82

.33
.35

.10
.08

.44
.46

*
*

.47

.08

.07
.06

.27

.07

.10
.08

.49

.09

.53

.09

.27

.08

.46

.10

♣0=did not use, 1=monthly or less and 2=two to three times a month or more
SG=Start of group, EG=End of group, FU1=3 month follow-up, FU2= 15 month follow-up†The data for the wait-list control is adjusted to represent a time period (42 days) parallel to the time between
starting and finishing the group. These two measures are both pre-group and indicate change that would haveoccurred anyway, whilst not attending the program.
* p<.05, **p<.01, ***p<001, comparing the start of group with other evaluation periods

32Medication use
These data represent medication use by people with memory loss, reported by thecarers/supporters in the evaluation, regardless of whether the person with memory
loss was participating in the study. Table 17 shows the number of people withmemory loss taking various drugs at each time period. About three quarters of thepeople with memory loss were taking cholinesterase inhibitors and about a third weretaking antidepressants. Only a small proportion of people with memory loss weretaking antipsychotic, benzodiazepine or anticonvulsant medications at any point in the
study, and there were few changes to medications over time, in terms of increased or
decreased dosage.
Logistic regression was used to determine whether there were increased odds oftaking antidepressant or cholinesterase inhibitors at the end of the group and threemonth follow-up. The people with memory loss were more likely to be taking
cholinesterase inhibitors at the end of the group (OR=1.75, se .43, p=.023) and at thethree month follow-up (OR=2.26, se .78, p=.018). There was no significant differencein the odds of antidepressant use at the end of the group (OR=1.45, se .32, p=.090) or
the three month follow-up (OR=1.33, se .40, p=.353). These statistics were calculated
adjusting for the lateness of the interviews.

33

Table 17: Medication use by people with memory loss over the evaluation periods, reported by thecarers/supporters in the evaluation, regardless of whether the person with memory loss wasparticipating in the study.
Medication and sample
SG
EG
FU1
FU2
Antidepressants
TO FU1: No on drug 33/82 (40.2%)
40/86 (46.5%)
39/84 (46.4%)
No missing,5

1

17/55 (30.9%)

19/57 (33.3%)

No missing

3

1

4

7

Change relative to SG (n)Decrease
No change
Increase

-

1
65
6

1
62
8

4
34
5

No missing

-

15

16

13

59/82 (72.0%)

67/86 (77.9%)

67/85 (78.8%)

5

1

2

41/55 (74.5%)

44/57 (77.2%)

39/51 (76.5%)

No missing

3

1

7

Change relative to SG (n)Decrease
No change
Increase

-

2
66
10

3
62
14

4
33
12

No missing

-

9

8

9

TO FU2: No on drug

Cholinesterase inhibitors
TO FU1: No on drug
No missing,

TO FU2: No on drug

3

17/51 (33.3%)

AnticonvulsantsNo on drug

3/82

3/86

4/85

2/51

No missing,

5

1

2

7

Change relative to SG (n)Decrease
No change
Increase

-

0
81
1

1
78
2

No missing

-

5

6

Antipsychotics
No on drug

3/82

4/86

4/85

6/51

No missing,

5

1

2

7

Change relative to SG (n)Decrease
No change
Increase

-

1
77
4

1
76
4

No missing

-

5

6

Benzodiazepines
No on drug

3/82

4/86

4/85

5/51

No missing,

5

1

2

7

Change relative to SG (n)Decrease
No change
Increase

-

0
81
0

0
80
0

No missing

-

6

7

SG=Start of group, EG=End of group, FU1=3 month follow-up, FU2= 15 month follow-up

34

Caring as an enriching experience
Factor analysis was conducted on a range of items representing outcomes expected by
LWML staff, for example improved communication, or less embarrassment aboutcaring for/supporting a person with memory loss. No clear factors were evident inthese responses. However, one item was of note.
Carers/supporters were asked the extent they concurred with the following statement,"Though caring for or supporting someone with memory loss can be stressful, theexperience has also enriched you. Do you agree or disagree?” Response options
ranged from 0 (strongly disagree) to 4 (strongly agree). Table 18 shows thatparticipants more strongly agreed with this statement at the end of the group and at thethree month follow-up after adjusting for lateness of the interview.

Table 18: Caring/supporting as an enriching experience♣, means and standard errors across theevaluation periods.
Group and sample
SG se
EG se
FU1 seFU2 seWait-list control†, n=30
2.37 .15
2.33 .16
Main sample
TO 15 MONTHS, n=56
TO 3 MONTHS1, n=86

2.44
2.49

.13
.11

2.71
2.79

.13
.10

*
**

2.54
2.76

.11

.13

*

♣ 0 (strongly disagree) to 4 (strongly agree)
SG=Start of group, EG=End of group, FU1=3 month follow-up, FU2= 15 month follow-up†The data for the wait-list control is adjusted to represent a time period (42 days) parallel to the time
between starting and finishing the group. These two measures are both pre-group and indicate change thatwould have occurred anyway, whilst not attending the program.
* p<.05, **p<.01, ***p<001, comparing the start of group with other evaluation periods

For the wait-list control group, there was no change in the response on the measure
between time the first questionnaire (mean 2.37, se .15) and the start of group
questionnaire (mean 2.33, se .16) after adjusting for days pre/post 42, (n=30, p=.502).
There was a significant difference between the main sample (mean 2.76, se .08, n=86)
and the wait-list control group (mean 2.28, se .15, n=30) in the endorsement of thisitem at time 2 after adjusting for lateness and time 1 scores (p=.008). That is, thefinding that caring for someone with memory loss was an enriching experience cannot
be explained by the results in the control sample. It is likely to be as a result of groupattendance.
At 15 month follow-up the enrichment item had reverted to baseline levels.

Satisfaction and comments about the groups
Carers/supporters were asked for comments about the program at the end of thegroups and at the 15 month follow-up. People with memory loss were asked about thegroups at the end of the program but they were not given satisfaction items at the 15
month follow-up. At any point more than a month or so at most after the end of thegroups, it would be of doubtful validity to ask for retrospective ratings of satisfaction.

35

Responses from all completed questionnaires (main sample) were used to evaluate
participants’ satisfaction with the groups. This was because some participants
completed these questions at the end of the group but did not go on to the follow-up
evaluations. It was considered optimal to report comments about the group for all who
responded to this question.
The person with memory loss: Satisfaction with the groups
The statements "I enjoy going to the memory loss group", and "Going to the memory
loss group has helped me", were held up in front of the participants with memory loss
at the end of the groups. The participants were asked, "Is this true?" and the same
methods were used to assess their answers as described in the procedures.
Table 19 shows how people with memory loss rated the helpfulness and theenjoyment of the group. This table includes data from all 101 participants (from themain sample) who were a part of the end of group evaluation. Most participants(96.0%) reported that they enjoyed the groups quite often or all/most of the time. The
majority (94.0%) also reported that the group helped them quite often or all/most of
the time.

Table 19: People with memory loss: satisfaction with the program at the end of the program(main sample, n=101):
Enjoyed the
The groupgroup?
helped me?
Rarely or never2 (2.0%)5 (4.2%)
Occasionally
2 (2.0%)1 (1.0%)Quite often
9 (8.9%)16 (15.8%)
All or most of the time88 (87.1%)
79 (78.2%)
Missing00People with memory loss: Comments on the groups
People were asked, “What did you enjoy about the memory loss groups?” and, “Howdid the groups help you?”
We identified themes that were evident in the responses from the 101 participants who
were a part of the end of group questionnaires. Seven broad themes emerged. The
most frequent response was that they noted the social and communication aspects ofparticipating, being able to talk openly, getting out, developing friendships, being able
to laugh with others. These sorts of responses were evident in 67 (66%) of thequestionnaires.
…showed that I can go out again and mix with people…
…being able to discuss my problems…….sharing, there being noembarrassment about it….
…talking freely about things, catching up with old friends…

36

A large number (n=60. 59%) of participants specifically mentioned that it was helpful
knowing that they were not alone, that there were others in a similar situation.
…knowing that you are not alone and there must be a lot of it about. To
know it's nothing to be ashamed of….
It has helped to know I am not alone, but has not helped improve mymemory.
…meeting people in early stage after only having met people in laterstage dementia…. the people and positive talk…. the doctor’s talk…
I have said yes because I feel it has helped. I think it has helped because
you see other people with the same problems…. and it is nice to go to agroup like that. It’s good to think you are not on your own…
Learning and the information participants came away with from the groups was
mentioned by 46 (46%) participants. Areas of learning mentioned included, where togo, what to do, strategies for remembering, seeing how other people cope, that there
are things you can do, information about the disease and its stages, information fromthe speakers and the video. In contrast to the carers/supporters (presented in the next
section) only one person with memory loss specifically mentioned learning about
services as having been helpful.
The info provided gave everyone that attended a better understanding.
the ways to do things positively. There was an understanding, a full
attempt to help people in how to cope with the loss, methods and ideas
and how they could be of assistance.
While this 'learning' included formal components of the program, they alsomentioned information and strategies learnt from other participants.
It helped me a lot, broadened my view, planning, talking about how toremember, meeting other nice people, learning what they do with theirlife.
Participants (n=28, 28%) noted that they felt supported, and understood. This category
includes both staff and other group members.
People were sympathetic.
Eleven participants reflected about how they felt about others in the group, feelingcompassion and watching others change. Others reported feeling relieved that they
were not as "bad" as others.
It made me feel lucky because I'm better off than some of them.
It was wonderful it was lovely seeing everyone get together. People
started to blossom a bit….. opportunity to learn from each other and tocommunicate better outside of group for other members….. can always

37

learn something, learning from other people, learning about carers'
experience/relationship, growing… amazingly good….
…proud that there are other people trying to change their lifestylebecause they have to…
One participant volunteered that it had been beneficial for their partner too.
I look forward to it, [my partner] benefited too.
While most of the participants said that they felt better knowing they were not alone
and that there were others in the "same boat", 11 (11%) specifically mentioned feeling
better, coping better, being less anxious, feeling a sense of relief and acceptance, andincreased confidence as a result of attending the groups.
…given me some optimism and understanding…
…things aren't as bad as I initially thought…confidence booster…
…good to hear things that worried me were the same for everybody
else…. Given me new insight….The knowledge that I gained was very
beneficial to me. I'm not anxious anymore about what will happen. I'm
not going to allow it to interfere with me.
The questions about enjoying the groups or how the groups helped were skipped if
participants reported that they rarely/never enjoyed the group or thought they helped.
These participants went on to be asked about improvements to the groups. However, acouple of statements by these people were recorded for these questions:
I was very self conscious. I didn't want to be conspicuous, I really didn't
enjoy it….
It hasn't been any help. I have forgotten what happened….
At the end of the groups people with memory loss were asked if they had any
criticisms. Out of the 101 people who filled in questionnaires at the end of the grouponly a small number of participants were critical when responding to this question.
Their comments are recorded below under the following general themes, practicaldifficulties, group dynamics and the content of the program.
Practical difficulties:
Two people commented that hearing was a problem for them and one person
mentioned transport difficulties, difficulties in getting to the groups. Anotherparticipant mentioned that the chairs were hard, and another requested more chocolate
biscuits!
Group dynamics:
Three participants stated that a particular participant was annoying or dominant in thegroup. Another noted the repetition in questions and that different levels of dementia

38

caused difficulties. One participant said that they felt bad/sorry for older people in thegroup, that they were having so much hassle.
The content of the program:
One of the participants with memory loss stated.
…being singled out, focusing on the memory loss was hard, because it
wasn’t a major problem (prostrate cancer and anxiety much more of aproblem)….
Another person wanted more information on facts about a specific condition (ievascular dementia) and one person found the sessions on feelings too abstract airy
fairy. One suggestion was that a presentation by the RTA would have been useful. A
participant commented that they did not like the term ‘dementia’ being used, it sounds
like I am demented.
Follow-up was mentioned a few times within and after the group, with one participant
stating that it would be good to be able to phone others, another stating it was not longenough, and another requesting more follow-up materials.
Carers/supporters: Satisfaction with the groups
At the end of the groups a total of 98 carers/supporters were asked “How helpful has
going to the Living with Memory Loss program been”…. “for the person you care foror support?” and “for you?” Table 20 shows that the majority of carers/supporters(79.2%) thought the group was helpful “a lot” or “somewhat” for the person withmemory loss. Carers/supporters also tended (85.4%) to report that the group helped
themselves “a lot” or “somewhat”.
At 15 month follow-up 63 carers from the main sample were asked: “In the year sinceattending, how helpful would you say the Living with Memory Loss program has
been for you?” They were then asked the same question about the person withmemory loss.
Table 20 shows that despite some tempering with time, most carers continued toremember the groups as being extremely helpful.

Table 20: Carers/supporters' beliefs [n, (%)] about the helpfulness of the groups at the end of thegroup and 15 months later.
Carer
About themselves
About person with memory loss
Helpfulness
End of group (n=98) 15 mths post
End of group
15 mths post
(n=63)(n=98)(n=63)
1. Helped a lot
74 (77.1%)
40 (65.6%)
46 (47.9%)
24 (40.0%)
2. Somewhat
21 (21.9%)
19 (31.1%)
30 (31.3%)
24 (40.0%)
3. No difference
1 (1.0%)2 (3.3%)18 (18.8%)
10 (16.7%)
4. Somewhat
00
2 (2.1%)2 (3.3%)
5. A lot worse0000Missing (n)
2
2
2
3

39

Comparing Tables 19 and 20 it could be interpreted that the perception ofcarers/supporters of how helpful the groups were for the person with memory loss wasmore negative than the person with memory loss thought the groups were forthemselves. However, caution must be taken when directly comparing the responsesof the carers/supporters and the person with memory loss. The carer/supporters’
responses were collected via a confidential, self-completion questionnaire. In contrast,
the person with memory loss was interviewed by Alzheimer’s Australia staff. Thismethodological difference in data collection may have contributed to the difference inmean scores between the carer/supporter and the person with memory loss.
Furthermore, a handful of people with memory loss attended groups without acarer/support person. The above ratings therefore do not report a matched sample ofcarers/supporters and people with memory loss.
At 15 months Carers/supporters were asked: “Thinking about it now, would you
recommend (or discourage) people with memory loss to attend the program?” They
were also asked whether they would recommend the groups for other people in theirsituation. Table 21 shows that carers/supporters tended to recommend or strongly
recommend the groups for other carers and people with memory loss.

Table 21: The number (and %) of carers/supporters in the main sample (n=63) who would
recommend or discourage others from attending the LWML Groups at 15 month follow-up.
Recommend……

For other carers

Strongly recommend
Recommend
Neither
DiscourageStrongly discourage
missing48 (78.7%)
11 (18.0%)
2 (3.3%)002

For other people
with memory loss
44 (72.1%)
18 (11.0%)
6 (9.8%)002

It is intuitively important that participants were satisfied with their experience at theend of the LWML groups. Carers also endorsed the groups for themselves, and for the
person with memory loss more than a year later. This strongly reinforces participants'satisfaction and beliefs about the helpfulness of the groups, particularly bearing in
mind the stressors involved in caring for a person with memory loss, and theprogression of the disease over time.
Important aspects for carers/how it made a difference 15 months after
the group
At the 15 month follow-up carers were asked "If the program has made a lasting
difference (better or worse) what difference has it made for you?", and "What do you
think the important things (if any) have been for you?"40

There were 63 questionnaires completed by carers/supporters during the 15 monthfollow-up. Of these 31 (49%) mentioned information and/learning from the groups.
This included speakers, learning from other participants (generally), understanding of
the illness and medications.
I've often thought back to what other carers said and how they solved
problems.
About a third (n=20, 32%) of the carers/supporters mentioned that realising they were
not alone hearing the experiences of others was important and had made a difference.
Friends that are in the same boat, different seats, that you can talk to.
The above quote also demonstrates that social aspects of the groups and thedevelopment of friendships, and open communication was also important for
carers/supporters. This was noted by 25 (40%) participants.
Friendship with people in the same situation and being able to talk overproblems. Also all the info on Alzheimers Disease, provided wider info
on counselling ….
Made friends and we are able to "cry on each other’s shoulders" together
as we both know what its like to have a partner with problems
The services available and how to access them were specifically mentioned by 14(22%) people as being important. This refers to people who were clearly discussing
accessing professional services.
Knowing who to contact and when…
Knowledge of various help agencies etc…
However, there were 11 general comments where people stated that just knowing that
help was available when needed, knowing there are others that care, and knowing
where to turn to, was important and had made a difference. It was difficult todistinguish carers reporting that they felt supported by staff and other participants,from learning about the availability of services.
I can receive help from wonderful people when I need it, it gives me afeeling of security.
…knowing that help is available when I may need it..
Only a handful of people mentioned specific components of the program, such as thelegal knowledge/services (n=3, 5%) were important. Six (10%) people specificallymentioned that knowing what to expect in the future was important.
…to give me a better understanding of Alzheimer's and what toexpect…

41

Seven (11%) carers also specifically noted that they felt more accepting, tolerant or
empathetic towards the person they care/for or support.
Before [he] went into the Nursing Home I found the program helped
me understand what it was like for him trying to cope with everyday
living and simple duties like washing and dressing and finding items.
This helped me to be more understanding and tolerant.
I am much more accepting of the condition.
One participant stated:…seeing Mum lose her fear of the unknown about the illness….
Six people mentioned feeling more confident.
It gives me confidence and support for the future so I should have noworries. The comradeship between the staff and other carers…..
Learning "coping" strategies was directly mentioned by 11 (18%) people. Participants
stated that they had learned to cope better in a general sense or mentioned various
particular strategies they had learned from other participants and from the groups.
I keep thinking back and remember methods of coping that we were
taught. I also enjoyed and learned from the experiences of others.
While some responses represented recurring themes, not all aspects of all comments
are classifiable. It is important to remember the trends described in this report reflect
individual experiences.
The program explained the illness more thoroughly. I feel much lessisolated and I no longer feel guilty when doing something forme….Losing my guilty feelings and also the isolation I felt.
One participant stated that it had improved communication between herself and herfather.
Support from within the group and Alzheimer's Association prompted
Dad and me to talk about memory loss.
Carers/supporters suggested improvements 15 months after the groups
finished
At 15 months the carers were asked, “In the light of your experiences since attending
the program what improvements would you make to it?” In the interests of brevity we
present the findings for people with memory loss at the end of the groups and thecarers/supporters at 15 months.
Similar to the people with memory loss, most carers were positive about the groups,
and many complimented the program when asked for improvements. Very few

42criticisms were mentioned by more than one or two people with one exception. When
asked what could be improved about ten participants mentioned wanting moreongoing support/follow-up or longer sessions.
Over the time there has always been interesting and informative
topics. Sometimes there is no agenda, and just talking and sharing has
been a great support. Much of the information given is not relevant at
the time and is forgotten. However, it becomes relevant so an
opportunity to have some sort of refresher course would be helpful.
However, another commented that they found it depressing listening to everyone
complaining.
One person wrote, mix up the visits with “home visits”. Another stated, have the talks
etc at a home caring for dementia cases. Let them see what really happens to their
loved ones.
A few people mentioned having more guest speakers (driving was specificallymentioned by one carer/support person), or videos.
The continuity of counsellors was raised by a couple of people, that change had been
off-putting. About five carers mentioned that they would have liked to have cometogether more with the person they cared for/support to find out more about what theygained, and how/whether they participated.
Other suggestions included: being on some kind of mailing list including lists ofcoping skills and up to date research, more outings as a group, more information
about services and activities available for people with dementia. Access/the locationof the groups was also raised.
Similar to the people with memory loss a few of the carers mentioned ways of
splitting the groups, for instance difficulties having residential with non-residentialcarers in the same groups.
Two ladies found it embarrassing to talk of weekly experiences in front ofpeople who did not live with the people they supported, I would separate
the groups into people who have a residential carer and those who live
independently as the problems are different and time is wasted discussing
aspects of memory loss that are not relevant to the other group.
It is important to note that we undertook no formal evaluation of particularcomponents of the program. Similarly, criticisms and suggestions from thesecomments need to be read as suggestions from individual participants rather thanrepresenting general beliefs about the groups. This is because there were very few
consistent criticisms.

43

Discussion
Main findings
The methodology for the study was selected to provide as rigorous a level of evidence
as possible, given the constraints of running groups with this heterogeneous
population. The evaluation has produced results strongly suggesting that support
groups, at least those run under the LWML program, do ‘work’. That is, it has made asignificant difference to those who have attended. The analyses presented in thisreport demonstrate that the person with memory loss and their carer/supporter werehighly satisfied with the groups. This is a commonly found outcome forsupport/information groups for carers (Brodaty et al. 2000), but it is rare for the viewsof the person with memory loss to be canvassed. It is equally rare to find
improvement in measures beyond satisfaction (Cooke et al. 2001; Pusey and Richards
2001). It is therefore of some importance that the evaluation shows improvements on
validated outcome measures. In summary, these were as follows.
Participants with Memory Loss
For participants with memory loss, there was no effect for the group as a whole on
symptoms of depression, but there was an effect for a sub-sample whose scoressuggested a clinical level of distress at the start of the group. It was apparent by theend of the group, and was maintained at three month follow-up. Controlling for
medication use suggested that this was due to increased use of antidepressants andcholinesterase inhibitors. Given that use of these medications had also significantly
increased by the end of the group, it is likely that attendance at the group influenced
both results, though we could not clearly distinguish causes and effects.
We were able to collect 15 month follow-up data from 10 (exactly half) of the clinicalsub-sample, and they remained non-depressed. Survivors through to 15 month followup may be a select sample but the fact remains that the LWML group appears to haveproduced a lasting effect on their depressive symptoms.
Carers/supporters
1) There was a significant improvement in carer/supporter general mental health(GHQ) apparent three months after the program finished, though not at the end of thegroup. This was evident both for the sample as a whole, and a sub-sample of people
whose scores on the GHQ at the start of the groups suggested a clinical level of
distress.
2) There were significant reductions in stress related to behaviour and/or othersymptoms which carers found hard to handle. This analysis included mean stressacross all behaviours, as well as those identified at the start of the group.
Improvements had occurred by the end of the program and were maintained at threemonth follow-up. They were not due to changes in other factors including medicationand service use, nor were the improvements explained by the control group. As such it
is highly likely the decrease in stress associated with changed behaviours results from
attending the LWML groups.
3) For the BDI, there were no changes over the evaluation periods for the group as awhole, but the clinical sub-sample remains of interest. There was improvement in BDIscores by the end of the program in a clinical sub-sample whom we were able to track44

through to 15 month follow-up. This may be a survivor effect; that is, those who wereless depressed at the end of the group were more likely to be available to long-term
follow-up. Nevertheless, it appears that on average, depressive symptoms were
alleviated for this sub-sample, at least for a time after attending the group.
4) At the three month follow-up (though not by the end of the LWML groups),
carers/supporters were more likely to have made legal/financial plans for the future.
While this may be related to group attendance, the results at the 15 month follow-up
indicate that this finding is more likely to be due to the passage of time. That is, thetiming (‘lateness’) of the questionnaires explained the increased likelihood ofcarers/supporters making plans between the start of the group and the 15 monthfollow-up.
5) As well as formal scales such as the BDI and the GHQ, we included questions
based on outcomes LWML staff expected to come out of the groups, for example lessembarrassment about the disease, or improved communication. These outcomes were
somewhat diverse, and analysis of change on each individual question would haverisked producing results purely by chance. We therefore conducted a statisticalprocedure called Factor Analysis to try and identify underlying factors and constructscales from the items. Unfortunately, no clear factors were evident, but a single item
was of note. There was a significant increase in carers/supporters’ endorsement of astatement about their role being an enriching experience. Significant change wasevident at the end of the LWML program, and was maintained at three month followup. It could not be explained by change over time in the control group.
6) At the 15 month follow-up, 58% of the original sample was available to completequestionnaires. By this time, none of the improvements had been maintained. Meanscores on most measures were not significantly different from those found at the startof the groups. It should however be noted, first, that carers had not deteriorated.
Secondly, though some of the same phenomena were reported by carers as causing
stress, different behaviours and symptoms associated with progression of the disease
were becoming prominent. Thirdly, at 15 month follow-up, carers remained extremely
positive about the LWML program, and the majority strongly recommended it forother carers and for other people with memory loss. The clarity and detail ofrecollections about how the groups had helped suggests that the program had been asalient experience.
Robustness of results
The analysis statistically adjusted for a range of covariates, factors which individuallyor in combination might affect or account for any improvements found. For instance,these included service use, deterioration in the abilities of person with memory loss,
lateness of questionnaires, medication use, attendance at LWML groups after theformal groups finished. Changes apparent by the end of the groups – carer/supporter
stress about changed behaviour, carers/supporters’ perception about caring,
depression symptoms for a clinical sub-sample of people with memory loss - cantherefore confidently be associated with attendance at the LWML program. One
caveat is that the effect on depressive symptoms of people with memory loss has been
mediated by increased medication use.

45

For findings not apparent until three month follow-up (carer/supporter GHQ scores)
some caution is required. The period between questionnaires for our wait-list control
group was 42 days, roughly the length of the LWML groups. That is, in general weknow that no changes occurred over 42 days without the LWML intervention, but we
do not know what would have happened over a longer period, such as three months. It
remains likely that it was the LWML groups rather than the passage of time which led
to the improvement in general mental health at three months. However, we cannot be
as confident about changes over longer time periods as we are with improvements
which were evident at the end of groups.
One improvement was maintained through to 15 month follow-up; those of theclinical sample of depressed people with memory loss from whom we were able tocollect data. Because of the small number we were not able to adjust for all possible
confounders.
The mean scores for all other measures were not significantly different at the 15
month follow-up than they were before participants attended the LWML groups.
Regardless, it is important to make the point that the result for carers/supporters postgroup and at three month follow-up is a major finding in its own right, especiallygiven the general failure in the literature in most support group studies to find effects
in any measure other than satisfaction. A failure to demonstrate maintained
improvement more than a year later is scarcely surprising. Many things happen overthe dementia journey, and it would be naïve to expect a 6-8 week program, meeting
one day a week, to still have measurable effects over a longer period. The scores on
the CDR, and the nature of some of the behaviours/symptoms causing stress tocarers/supporters at 15 month follow-up, confirm that there had been somedeterioration in the person with memory loss.
It is also important to note that carers/supporters were not worse than they had been
before attendance at the LWML groups, and remained extremely positive about the
program. They recommended it for other carers/supporters and people with memory
loss, the majority endorsing it strongly. As noted, this is a common finding. It is much
more significant for participants to be still enthusiastically endorsing a short program
15 months after it finishes.
Methodological considerations and potential limitations of the study
The main potential limitations of the study are sample and response bias.
Potential for sample bias
There are four aspects of sample bias to consider in this study. Firstly, by definition,
those with memory loss who attended the groups were at a relatively early stage. At aclinical interview, they showed sufficient insight to be able to discuss their difficulties
before enrolling in the groups. Our cognitive and insight measures reflect this (seeTable 10) as do the qualitative comments by participants reported in the Results
section. They spoke with feeling both about living with their own memory loss, andabout how the LWML program helped them.
The high levels of insight found in this study are of particular interest in that theychallenge a popular view that people with dementia have little or no awareness. They46

tend to confirm the assertion of Clare et al. (2002) that awareness is a variable ofclinical importance in designing interventions. It could be argued that a high level ofawareness makes this an elite group. However, the actual proportion of people withdementia who retain insight into their problems is still unknown because
methodological problems have confounded this area of research (Clare et al. 2002). It
is worth highlighting that it was never an aim of the LWML program to provide help
for all people with memory loss and their carers/supporters. Its objectives are toprovide assistance at the earliest possible stage after diagnosis.
A second possible source of sample bias is the notion that people who choose toattend support groups may be in themselves a select group. For instance, the main
sample was highly educated and women carers/supporters were over-represented.
However, it has been noted elsewhere that Alzheimer’s Australia may serve amoderately well-educated population with English as its first language (Bird andParslow 2001). An over-representation of women as carers has been a feature of theliterature for decades. The sample is therefore roughly representative of the core
Alzheimer’s Australia population. Service access issues and whether the groups
would be of benefit to a less well-educated population is beyond the brief of thisevaluation.
The third possibility for sample bias is that the results in this report reflect responses
from 22-60% (varying across States) of the participants who attended LWML groups
during the study period. A plausible explanation for the range in response rates wasthat some States were more diligent than others in approaching participants to takepart in the evaluation. All eventually filled their quota but some took much longer todo so.
A final possible source of bias is that those who did not like the groups may have
dropped out of the evaluation. However, attrition was not high up to the three monthfollow-up. By 15 month follow-up nearly half the sample had been lost, scarcely
surprising given the fact that dementia is a progressive disease.
In summary, we acknowledge the potential for these biases to have influenced theresults of this evaluation. However, a substantial number of people were assisted,showing improvement on validated outcome measures as well as satisfaction. Those
carers/supporters whom we were able to track at 15 months still felt almost as
strongly as they had immediately after attending the LWML groups that it helped
them and the person they cared for.
Potential for response bias
For carers/supporters of people with memory loss, the potential for response bias was
minimised as the questionnaires were completed in private, and sealed in envelopes.
They were not seen by Alzheimer’s Australia staff. It is also unlikely
carers/supporters would be biased by remembering their responses from the previous
administration. The questionnaires included a large number of items (most on a Likert
Scale), and there were substantial time intervals between the completion of the start ofgroup, end of group and follow-up questionnaires.
The feelings of the person with memory loss were directly canvassed because their
voice needs to be heard, even thought this rarely occurs. Their opinions about the47

groups and their needs are clearly of considerable consequence. Further, their
participation makes the program unusual and informant reports on the inner life ofpeople with dementia/memory loss may not always be valid - dependent upon anumber of variables including nature and quality of the relationship (Clare et al.
2002). The methodology used to canvas their beliefs, experiences and feelings was
based on a large literature on the inherent difficulties for this population in processing
incoming information, and retaining in memory the concepts being measured longenough to consider them in depth. Standardised administration by staff with dementia
specific skills was required. However, there is the potential for response bias because
participants may have wanted to please the staff administering the questionnaire, orthe staff themselves may have exaggerated change.
The possibility that people with memory loss would remember the answers they gaveon previous administrations weeks or months before is, by definition, highly unlikely.
The chance that staff administering questionnaires remembered previous responses
and doctored them in the desired direction is extremely slim. In any case, we
statistically controlled for situations where the same person administeredquestionnaires at the start of the group and at follow-up time points. This did notchange the findings.
Finally, though selection of instruments was satisfactory on the whole, it is matter ofregret that we used the shortest form of the General Health Questionnaire and deleted
an anxiety measure from the carer/supporter questionnaire in order to allay concernsthat it was too long. It is not possible to specifically identify anxiety from the shortform of the GHQ, and it may be that the distress apparent on this measure and stressassociated with behaviour was manifested more as anxiety than depression. In a recent
study, symptoms characteristic of arousal were as salient as depressive symptoms
amongst carers of people with memory loss (Caldwell and Bird 2004). We take full
responsibility for the decision not to measure anxiety.
Comment on the program
Cooke et al. (2001) noted that poor results from psychosocial interventions, including
support/information groups, has led to calls to improve the content of programs. They
argued that components with known effectiveness need to be incorporated.
Unfortunately, these calls have generally been little heeded. In contrast, the LWML
program is based on an intimate knowledge of the needs of carers/supporters built up
by Alzheimer’s Australia over many years. Social support and training in practicalproblem solving, specifically identified by Cooke et al. (2001) as likely to be effectivein improving carer well-being, are core components of the program. This may explain
the positive results.
The concept of providing support groups for people with dementia is relatively new.
The content for people with memory loss was planned based on a pioneer program
developed in the United States (Yale 1995), and experience gained in those AustralianState Associations which had run such groups for some years. It was beyond the scopeof the evaluation to investigate the effectiveness of individual course components.
However, the positive results in this study suggest that the content, which involves agreat deal of mutual support, sharing problems, and being able to speak openly about
them to people who understand, is important. This was strongly endorsed by48

participants with memory loss and their carers/supporters, in their comments about thegroups (reported in the Results).
Finally, the relative cost-effectiveness of the LWML program is a noteworthy feature.
It is short (2 hours, once a week for 6-8 weeks) and it is delivered in a group setting.
Although some carers/supporters continue to use the services of Alzheimer’s
Australia afterwards, our results show that this concentrated burst of information,social support, and problem solving is effective in itself.
Clinical implications
Increased capacity to cope with changed behaviour is of great clinical importance.
Behaviour which is hard for family members to accept and understand is a major
predictor of their giving up and allowing those they care for to go into residential care(Morriss et al. 1996). This is both costly financially but also marks the effective end
for many couples of married life, often a very abrupt end given competition forresidential care places and the need to make instant decisions when a bed becomes
available (Bird and Parslow 2001). Problem behaviour often also leads to overuse ofpsychotropic medication, itself expensive and with the potential for harmful sideeffects (Bird et al. 2002).
Our data do not allow us to determine whether the improvements in stress were
because of a decline in behaviour, because carers/supporters understood and accepted
it more, or because they had learned better ways of dealing with it. It is likely to be a
mix of all three; behaviour problems in dementia are often an interaction of behaviour
and carer response, and changes in carer behaviour often affects behaviour of theperson with dementia (Bird et al. 2002). Whatever the mechanism of change, theimprovement in stress was clear and highly likely to be a direct result from attending
the LWML programs.
The improvement in scores for the sub-sample of participants with memory loss whoreported depressive symptoms of a clinical level at the start of the group, is also ofimportance - beyond the obvious benefits to quality of life. The findings showed boththat this was statistically accounted for by increased use of anti-depressants andcholinesterase inhibitors. The increased use of these medications was more likely after
attending the groups. That is, though the causal pathway is not clear, it is possible thatgroup attendance influenced both the use of medication and depressive symptoms.
Depression increases the risk of a number of adverse outcomes for this population,
including physical morbidity (Bird and Parslow 2001) further cognitive decline(Bassuk et al. 1998) and institutionalisation (Steeman et al. 1997). Depression in the
person with memory loss is also a major source of distress for family members – insome instances it is worse than effects of difficult behaviour (Teri 1997).
That is, apart from the benefits to quality of life and morbidity, two predictors of
institutionalisation improved following attendance at the LWML programs.

49

Conclusions
Research canvassing the opinions and experiences of both people with dementia andtheir carers/supporters is rare and methodologically difficult. Despite these
difficulties, the results of this evaluation are a strong endorsement of the content andmethod of delivery of the LWML programs. This evaluation found improvements on
validated measures up until the three month follow-up, a period reflecting the earlystages of dementia. Assisting people living with early stage dementia is the primary
goal of the program. For a brief time-limited, group intervention, the positive results
are important given the rarity in the literature of improvements over and above thesatisfaction of participants.
Collectively, these are strong findings. The Living with Memory Loss program appears
to be delivering well chosen material very effectively, and it has a significant effect on
those who participate in it.

50

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