SG NPO STS

Information Identifying
Resources to Assist
Families Impacted by
Dementia Beginning Prior
to 65 Years of AgeAcknowledgements
We would like to acknowledge the funding Alzheimer’s Australia NSW
received from NSW Health, as part of the Care for Carers program.
Without this funding it would not have been possible to produce thispublication for carers of people with younger onset dementia.
We would also like to acknowledge the helpful suggestions andfeedback that was given to us by the carers from the Younger Onset
Spouse Carers Group, which meets at North Ryde.
We acknowledge too, the contribution of the Regional Dementia
Advisors who provided valuable feedback about inclusions in thispublication. They helped in a number of ways to retain our focus on
the unique needs of family carers who live in isolated rural areas
in NSW.
Also there were many staff within Alzheimer’s Australia who provided
feedback and ideas – Jane Doyle, Lee Davidson, Anne Hall, Dawn
Herd, Marilyn Macarthur, Mary Roddy, Kirsty Webb andSusan Williams.
Rosemarie Tweedie and Lisa Lovi
Alzheimer’s Australia NSW
April 2002

This publication was funded by the NSW Health Department, through theCare For Carers programWritten by Rosemarie Tweedie and Lisa Lovi
Alzheimer’s Australia NSW© April 2002 Alzheimer’s Australia NSW
ISBN 095865297X

Alzheimer’s Australia NSW Incorporated
Vincent Fairfax Family Resource Centre
Macquarie Hospital Campus
Cox’s Road Entrance
North Ryde NSW
Postal Address
PO Box 6042
North Ryde NSW 1670
Administration Telephone
02 9805 0100
Facsimile
02 9805 1665
Emailadmin@alznsw.asn.au
Library email
library@alznsw.asn.au
Websitewww.alzheimers.org.au

A copy can be obtained by downloading from the website,
telephoning or writing to the Helpline at the above address or
telephoning1800 639 331.

Designed by Vermilion
Printed by Beaver Press

This publication provides a general summary only of the subject mattercovered. Any person with dementia or a carer for person with dementia
should seek professional advice about the specific case. Alzheimer’s
Australia NSW is not liable for any error or omission in this publication,even if negligent.

Contents
About Signposts
page 2
Specific characteristics of those diagnosed with younger onset
dementia
page 3
Problems faced by those who are younger when diagnosed
page 3
Emotional reactions immediately after diagnosis
page 5
Managing the difficult period immediately after diagnosis
page 8Signs that extra help may be needed
page 10
Talking about the diagnosis
page 12Planning for the future
page 14
Resources to assist
page 20SIGNPOSTS

1ABOUT ‘SIGNPOSTS’
Purpose To provide resources to assist families where a diagnosis of younger onset has
been made.
 To assist family members to more easily find the information and resources theyneed to manage this demanding time.
 To assist health professionals in working with this unique group of people.

How to use Signposts
 Signposts is intended to provide basic, useful information, rather than being an
exhaustive source of knowledge for family carers of people with younger age onset
dementia.
 It includes telephone numbers and sources of further information that can beaccessed when needed.

What is Younger Onset Dementia?
 Often the terms early onset or younger onset are used interchangeably to refer todementia that occurs in those who are have been diagnosed with dementia under theage of 65 years. The majority of those who have this diagnosis are between 50 and
65 years old but there are also many younger than 50. However the term that
describes this dementia is younger onset dementia. It should not be confused withearly stage dementia as this term refers essentially to those who are in the earlystages of the disease at any age.
 Information as to the rates of this dementia varies. One rate suggested is that about
1 in 1000 people will develop dementia before the age of 65.1
 The person diagnosed and their families will experience many problems that are
similar to those who are older when diagnosed; but there will also be many that are
specifically related to this age and stage of life.
1

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www.alz.co.uk (Alzheimer’s Disease International)

SPECIFIC CHARACTERISTICS OF THOSE DIAGNOSEDWITH YOUNGER ONSET DEMENTIA
As this diagnosis often comes in ‘the prime of life’ it is usually unexpected, and often
the person: Is still working and has significant financial commitments.
 Has a younger family.
 Has more responsibilities not only within their immediate family but in their extended
family and the community.
 Will be more aware of the disease in the early stages.
 Will have to manage a wide range of responses to their diagnosis because of theabove, and manage more confusion and uncertainty regarding their health.
 May experience a lack of knowledge or understanding of younger onset dementia by
the medical profession.

PROBLEMS FACED BY THOSE WHO ARE YOUNGER
WHEN DIAGNOSEDImpact on the person diagnosed with dementia
The person will experience a range of the following feelings:
 Significant shock, anger, being overwhelmed, as the diagnosis is usually totally
unexpected due to their age.
 Fear of the unknown.
 May suffer financial difficulties as a result of the disease.
 The difficulty of having to end work or career prematurely, and learn to adapt to a very
different style of life.
 Can feel hurt or rather confused by the reaction of others to their illness. This can varyfrom disbelief/horror/fear/confusion from friends, and many friends may distancethemselves as the illness proceeds. This can happen when the person diagnosed isolder, but often is more extensive when he/she is younger.
 Can feel their experiences are being trivialised by the statements that some people intheir network may make. For example, ‘I have trouble remembering things too.’

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3 In the early stages, many of those diagnosed will have insight into what is happening
to them, and many will have assumed that this was a disease of an older person, notsomeone their age.
 The person diagnosed may want to participate in decisions regarding the future andyet can be, or feel left out of the consultation process because of their diagnosis.
 The person will need to slowly address and grieve their ongoing disconnection to theirsocial and emotional world.

Impact on partner
 The partner will experience many of the above feelings and reactions as well.
 The partner of the person diagnosed will have his/her life upturned as well and find itvery difficult to accept the diagnosis. There is the significant loss of physical andmental abilities, loss of companionship, intimacy and the future of the relationship. In
addition to these changes there may be dependent children whose needs still
continue.
 After diagnosis, rapid changes will take place within the partnership. During the earlystages the partner will often have to initiate, support and plan for the two of them as
they address the impact of the diagnosis.
 Issues regarding work, family finances, disease progress, children’s needs andrelationship changes will need to be addressed in some way.
 The person diagnosed needs to be included in this process as much as possible.
 There will be changes in the sexual relationship between the couple and for many thismay become a problem area. Some carers will find it hard to maintain a sexual
relationship due to other changes in their life, while for some it will continue to havemeaning. As the illness progresses there will be further changes and challenges. For
example there may be increased sexual demands, lessening sexual interest and/or lossof inhibition.
See the Resources section for more information.

Impact on family and friends
 Relatives and friends initially will also experience a range of feelings similar to thoselisted previously on hearing of the diagnosis. This will include feeling shocked andsurprised and possibly helpless. This may limit the amount of support and assistancethey can initially provide due to their own reactions about the diagnosis, theirshock and feelings of helplessness and grief. Often the person withdementia or the carer will need to take the initiative in reaching out tospecific relatives or friends, so as to garner their emotional or

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practical support. Often when family members or friends understand how they can beof assistance and that they are needed in some way, they are more able to overcome
their feelings of helplessness or their desires to avoid.
 Depending on the age of the children, they will also have similar reactions. A younger
child (prior to adolescence) is more likely to experience bewilderment and general
confusion, and be less able to articulate specifically their range of feelings. Often very
young children will feel as if they might ‘have caused’ the disease in some way andfeel responsible for what is happening to their parent.
 A diagnosis of dementia will often disrupt stages of family transition and development.
For example, a child needing to stay at home to assist in managing the care of theirparent, may be hampered or find it impossible to participate in sport on the weekend.
 Young adults may feel ‘trapped’ at home and experience difficulties in progressing
towards achieving independence in their lives, in areas such as continuing with studies
and training, or the ‘rite of passage‘ of leaving home.

Underpinning principles associated with this diagnosis
 This disease is a health issue and is not confined to the elderly.
 A person with dementia has the right to be treated with dignity and have access toappropriate services.
 The challenge for the person with dementia and the family is to learn to live withdementia and to negotiate the transition times throughout the pathway of thedementia.
 The person with dementia always has understanding (at varying levels) and therefore
needs to be included in day to day decision making as well as future planning.

EMOTIONAL REACTIONS IMMEDIATELY AFTERDIAGNOSISThe period after receiving a diagnosis or possible diagnosis is an extremely difficult timeas the person diagnosed and those close to them experience their world ‘falling apart’. It
is traumatic and overwhelming and often time is needed to reflect about the diagnosis andits potential impact. Some may manage this difficult time in a variety of ways by: Being practical in seeking information and beginning to plan.
 Withdrawing or becoming almost immobilised for a time.
 Needing to talk with close family and/or friends to start to understand the possible
implications.
 Throwing themselves into physical activities.
It is important to know that there is no ‘right or wrong’ way for this process.

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5

The person with the diagnosis, the partner, friends and relatives, may all experience thesereactions but the strength of these will inevitably vary.

Helplessness
Being told the person’s condition will deteriorate, and that there is very little that can bedone to halt this process can trigger overwhelming feelings of helplessness. Some of thequestions asked will be: How will we cope?
 How will I manage the disease when it becomes worse?
 How will I survive?

Anger and ‘Why Me’
Often part of the process can be strong feelings of anger and asking the questions
associated with ‘why is this happening to us?’ There is significant loss associated with thisdisease, which can trigger anger as well as grief. What about our plans for travel? Whatabout our plans for life after the children leave home? Will we be able to stay in our
house?

Significant shock
Hearing the news that you or your partner has a diagnosis of dementia will often send a
person into shock – not really knowing what questions to ask or what to do is a part ofthis reaction. Feeling numb can also be part of this process. Again, this is not an unusual
reaction, and the strength of this will reduce over time; but part of the feelings may
remain quite a long time. Another response soon after the diagnosis may be to feel quite‘panic stricken’ or paralysed and unable to act.

ReliefThere can be some feelings of relief on hearing the news especially if there has beenongoing concern and confusion about unexplained unusual or ‘out of character’
behaviours by the person diagnosed. The relief can come from at least knowing that there
is a physical cause for this behaviour, but this will also be mixed with other reactions.

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Guilt and shame
When there is a realisation that certain problematic aspects of a person’s behaviour havebeen due to a physical condition, there may be guilt or shame about recent arguments
or comments that have been made ‘in the heat of the moment’. These feelings can bequite unpleasant.

Distress
Receiving such a diagnosis is very distressing and each person will express this distress invarying ways, including crying a lot, talking with a friend or seeking help and information.
Some carers (often male) may respond in other ways, which may include withdrawal fromsocial contact or focusing their energy on physical work or activity to assist in gaining a
sense of control, or distancing themselves from the complexity of the problems.

Grief
Often the diagnosis will trigger a process of grieving which will continue throughout thedisease process in varying degrees of intensity. The difficulty of this grief is that at times itwill be all consuming and often there may be a sense that others do not understand theiremotional state (and often that will be part of the reality).
It is important to remember that grief is a normal response to loss and continues in many
forms through out the journey of the disease. The losses that people with dementia andtheir family carers experience are significant and many and include the following: Previous levels of cognitive abilities.
 Previous levels of physical abilities and functions.
Dreams and expectations of the future of the relationship and of their life together.

 A sense of security.
 A hope for future.
 A sense of a degree of predictability and control over life.

If you are feeling overwhelmed by these reactions…
The previous relationship that the carer (and others) had with the person with dementia
will change in many ways, and new ways of relating and communicating will be required.
This is a learning process, which will take time, information, support, patience andforgiveness. It will be important to look at ways of building up personal, social andphysical resources to place oneself in the best possible position to be able to manage andcope with the changes that lie ahead. The next section provides some ideas on how thismight be able to be achieved.

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MANAGING THE DIFFICULT PERIOD IMMEDIATELY
AFTER DIAGNOSISHow is help accessed?
 Via the Dementia Helpline or a Regional Advisor or General Practitioner or Aged Care
Assessment Team (ACAT).
 It is helpful to speak with a person who knows and understands about dementia andhow the diagnosis may be impacting. These services can provide current information,
and are familiar with the range of tumultuous feelings and concerns of the person withthe diagnosis and family members. These services can provide information about thenext possible and useful steps.
 Some family members or the person with the diagnosis will find a General Practitioner
can be a source of information about the disease as well as information for accessing
appropriate services.
 Those impacted by the diagnosis need to find some ‘safe’ friends with whom to talkand share what is happening. All those impacted need to be able to talk over the
implications of the diagnosis with others of their choice.
 Another source of information is the internet.
See the Resources section for more information.

What is available in the community to assist the family soon after
diagnosis?
 Counselling can provide people with an opportunity to discuss in detail the impact ofthe diagnosis and the resulting changes they are experiencing. Counselling can help
people to identify further sources of assistance and to develop a plan to better
manage this difficult time.
 Specialist medical services in physical and mental health.
 Group programs such as:
In NSW, a structured seven-week education and support program is conducted forpeople in the early stage of Alzheimer’s disease or another dementia, and theirfamilies and friends. This is called the Living with Memory Loss Program.

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Throughout NSW there are over 170 Support Groups that usually meet monthly toprovide information, mutual problem solving and sharing of ideas. Many carers findthat the group provides a ‘safe haven’ to discuss issues that are difficult to talk about
with people in one’s usual social network.
Occasionally there are telephone support groups established throughout the state.
 Information (journals, books, Helpsheets, videos) via internet and libraries, particularly
Alzheimer's Australia NSW Library & Information Service.
 Education – Many areas in NSW run structured dementia educational sessions led byhealth professionals.
 Community support services, for example, respite care, day centres and homecare
services.
See the Resources section for more information.

Further along the journey – how can a social network be maintainedand developed?
One of the ways to manage throughout this time is to foster and maintain a strong social
support network. Maintaining a variety of relationships can work to provide support, ideas,mutual problem solving and normality, both for the person diagnosed and the carer. Bothexperiences can be lonely and isolating, and so spending time reflecting on and planningan effective social support network can be worthwhile, despite the effort that is requiredat this difficult time.

Why is a strong support network important?
 Closer social ties with others assist to be less vulnerable to depression.
 A wider social support network offers many more physical and emotional resources toa person as well as offering differing points of view for problem solving.
 Adequate social support works to keep a person feeling more positive about
themselves.
 Isolation from relationships reduces a person’s capacity to cope and effectively
problem solve.
Obviously there will be periods of time when there will be no time for talking to others or‘reaching out’ to maintain relationships. However at other times this will be possible.

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9

Ways of maintaining and expanding the social support network at thisdifficult time Think of ways to develop a current relationship by talking more openly about dailyexperiences, or plan to spend more time together. Some ways to do this include
organising an activity together, talking more often on the phone, or if practical, invite
the person over.
 Are there any relationships or friendships from the past that can be rekindled? Is therea person with whom there was regular contact who could be re-contacted?
 Can new friendships be started or formed? This can happen through an existingorganisation, through a support group network or someone who lives close by who
can be visited, in person or via the phone.

A SOCIAL SUPPORT NETWORK/TEAM CAN ASSIST YOU IN YOUR JOURNEY
OF DEMENTIA.
Even if some family members or friends are unable to offer the understanding that may
be sought, they may still be able to offer a sense of normality, and to help the carer or
the person living with dementia maintain a part of themselves outside of the caring roleor the diagnosis. Staying separated from extended family and relationships may be anormal reaction for a period of time after the diagnosis. However if this pattern continues
over a long period of time, it will be detrimental for both the carer and the person withthe diagnosis.

SIGNS THAT EXTRA HELP MAY BE NEEDEDMANY CARERS OF PEOPLE DIAGNOSED WITH DEMENTIA EXPERIENCE ANXIETYAND DEPRESSION. EARLY ASSISTANCE CAN HELP IN PREVENTING A
DETERIORATION OF SYMPTOMS, WHICH MIGHT RESULT IN EVEN GREATER
DIFFICULTIES IN BEING ABLE TO COPE WITH THE SITUATION.
It is important for the carer to seek assistance from either their nearest doctor or mental
health service if the carer experiences two or more of the following signs over a couple
of weeks:

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Symptoms of depression
 Changes in sleeping patterns (either waking up more at night or needing to sleep morethan usual).
 Changes in appetite, for example, loss of interest in food or only being interested infood when it is ’put in front of you’.
 Feeling more ‘teary’ than usual and getting upset about minor matters, for example,
running out of toothpaste.
 Feeling even more tired than usual which is not improved by increased sleep orincreased relaxation.
 Feeling increasingly more anxious and worried about the situation than the person has
felt previously.
 Thinking a lot more negatively than usual, and not being able to limit or restrain thesemore harmful and negative thoughts.
 Not wanting to see friends and talk to people as much as previously.

Some of the symptoms of anxiety
 Mind becomes hyper-alert.
 Increased sweating.
 Dry mouth and increased thirst.
 Feelings of fear and apprehension that is more than usual.
 Butterflies in the stomach.
 Sleeping difficulties.
 Feeling out of control.
 Feeling as if you are going ‘crazy’.
See the Resources section for more information.

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11

TALKING ABOUT THE DIAGNOSIS
Talking to the person about their diagnosis
Part of the philosophy of Signposts is that it is important for the person with dementia toknow about their condition in the early stages.
 One of the first questions that a diagnosis of dementia raises is ‘Who needs to be told
about the diagnosis?’ Today it is becoming generally appreciated that, as with any other serious illness, aperson with a diagnosis of dementia has a right to know as well as needs to know.
 As many decisions will be required there needs to be an openness to receive anddiscuss information and ideas so as to learn about the illness and ways to live with it.
This openness for the person diagnosed, and for family members, facilitates the best
decisions in all areas including legal and financial matters.
 It is important to remember that many people already sense and know that ‘somethingis wrong’ prior to receiving the diagnosis. This includes both the person with thediagnosis and family members. This can mean that openly addressing the diagnosis
is recognising that which may already be felt at some level and can bring a degreeof relief.
 If family members are unsure as to what to say, consider discussing this with acounsellor, your general practitioner or some other valued health professional.
 There is also a useful Helpsheet, written specifically for people with dementia,
About You…Talking About the Diagnosis.
See the Resources section for further details on obtaining Helpsheets and accessing counselling services.

Telling children
People with younger onset dementia are more likely than older people to have younger oradolescent children. The spouse of the person with dementia will inevitably feel worried orconcerned about how the illness will impact on children. The following helpful suggestions
have been adapted from Younger People with Dementia, Alzheimer’s Disease Society,1996, p25.2

2

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Younger People with Dementia, Carer Learning Programme. (1996) Alzheimer’s Disease Society, London.

 Children of any age need to have some basic information about dementia and how it
may impact on their parent and their family life.
 Clear, simple and open explanations are beneficial to children. It is also important toprovide children with many opportunities to ask questions and to discuss their fears.
This may need to be done many times through out the course of the illness.
 False promises that ‘things will work out’ may only serve to heighten children’s fears
and apprehension about the future, rather than lessen it.
 It is important to involve children in the care of the person with dementia. However
this can not be to the extent that they are given too much responsibility and they areunable to be involved in their own age appropriate activities.
 Younger children may require some reassurance that they have not contributed to theperson having developed dementia, or to their unusual behaviour.
 Children and young adults may sometimes feel embarrassed and angered by theirparent’s unusual behaviour, and may feel uncomfortable about bringing friends home.

Pointers for telling children about the disease
Adapted from: Younger People with Dementia, Alzheimer’s Disease Society, 1996, p25.3
 Explain that dementia is a physical illness that affects parts of the brain slowly overtime, and this makes it increasingly difficult for the person to think clearly, toremember or to carry out ordinary day-to-day activities. The behaviour of the person
will change and deteriorate and he/she is unable to help or stop this change.
 Their parent or relative is not going to get better as there is no cure at the moment;
but there may be one in the future.
 Not only will their parent or relative not get better, but they will slowly be able to doless and less for themselves, and will need more and more help from those who livewith them.
 No one is to blame for what has happened to their father/mother or relative.

3

Younger People with Dementia, Carer Learning Programme. (1996) Alzheimer’s Disease Society, London.

SIGNPOSTS

13 It is not likely that they are of greater risk of developing dementia, however they can
see a genetic counsellor to more fully discuss their situation and concerns. Older
teenagers and young adults need to be told about this service and given this option.
Alzheimer’s Australia has a range of books written for children of all ages, which can beused to help children understand the changes that are taking place for the person withdementia, and may serve as a useful start to a discussion about the dementia, and how it
is impacting, and will impact on family life.
See the Resources section for further reading.

Telling others‘To tell or not to tell’ friends and neighbours becomes a significant question for the personwith the diagnosis and family.
Like any other serious illness, which has been diagnosed, a decision has to be made as towho needs to know about the illness. Who needs to know will change over time. In theearly stages a decision may be made to tell those who are most likely to observe
symptoms of the disease, such as immediate family, close friends, an employee and workcolleagues. As the disease progresses more people will probably notice changes, andfamily may choose to tell a wider number of friends and acquaintances.
It can sometimes be problematic convincing others that there is a real problem if theperson’s symptoms are not readily apparent, especially if the person looks well andhealthy and can participate in a social capacity, albeit at a reduced level. Sometimes tellingothers can assist them understand some of the changes and assist in taking away someof the distress and problems associated with lack of information and silence about
the condition.

PLANNING FOR THE FUTURE
Including the person with the diagnosis in decision making
It is important to consider that the person who has been diagnosed needs to be included
wherever possible in the important decisions for the present and the future. This will
depend to some extent on the capacity and the degree to which they are able toparticipate in this process. It should not be automatically assumed that the person withdementia does not have the capacity or insight to participate in decision making.
In the early stages of the illness the person may have some very clear ideas about
what they want to happen in the future.
It is imperative to take control of the legal and financial situation as soon as
possible. This can help to avoid difficulties as the illness progresses.
Some important considerations include: Deciding about future employment.
 Planning for the financial future.

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SIGNPOSTS Organising banking systems.
 Finalising legal arrangements.
 Living arrangements.
 Considering future lifestyle decisions.

THERE IS A NEED TO ENSURE THE FOLLOWING ARE IN PLACE: An up to date will.
 An Enduring Power of Attorney (Power of Attorney alone is insufficient when the
person loses capacity to make decisions).
 Enduring Guardianship.
Financial Planning with a financial advisor.

See enclosed Helpsheet for further information

The work place
If the person diagnosed with dementia is still employed, their work situation needs
re-assessment, reviewing and planning for the future. Those people with financial
commitments and families to support need to identify options, and plan accordingly.
If the person is working, consideration should be given to the following: Does the employer know the situation?
 Will the employer make provisions to enable the person to remain in the job so that
contributions to their superannuation can continue for as long as possible?
 Is it appropriate for the person to remain working?
 Is an advocate (such as Trade Union representative or personnel officer or someone
trusted by all parties) available for the person with dementia to liaise with theemployer?
 If the person with dementia is not employed, are they claiming all the benefits forwhich they are entitled?
 If the person is self-employed, what parts of the job are they still able to do? In what
aspects of the job will they need assistance? Are they able to manage the financial
aspects of the job? How will they wind up the business? Where will they direct their
existing clients/customers? If this is not possible, or the choice is not to finish thebusiness, how can the work be continued?
It is important to discuss these issues with the person and to seek their views on what
they would like to see happen.

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What rights does the person have to stay in their job?
 There is no employment law that specifically deals with younger onset dementia andthe workplace. People who believe they have been discriminated against may wish toseek legal advice.
 Employers should not, upon notification of dementia, respond by automatic dismissal
or retirement against the person’s wishes. The personnel officer or advocate needs to
be involved at an early stage to help negotiate with the employer.
 This is a complex area and it is advisable to discuss the situation with a variety ofpeople. For example, a General Practitioner, another health professional, solicitor,
trusted colleagues.

Does the carer need to give up their work?
This will depend on the carer’s situation. Some carers feel that the shock and the griefexperienced on learning of the diagnosis is such that they do not have the energy or
resources to continue working. Others have chosen to continue working as it provided asense of having a life outside the caring role. For others it is a financial necessity to remain
working. If uncertain about decision making on this issue, counselling may assist.

Benefits available
If the person with dementia is no longer in employment, the Financial Information Officer
at Centrelink will advise about eligibility for financial assistance.
It is important to be aware that there is financial assistance for carers of people withdementia.

Financial planning Australian Securities and Investments Commission (ASIC) and the Financial Planning
Association (FPA) have produced a useful booklet called Don't Kiss Your Money
Goodbye to assist people to choose financial planning services, a copy of which canbe obtained by contacting either organisation. Contact phone numbers appear at theend of this section. The FPA also publishes a directory of their Principal Members in abooklet format.
 Most banks also offer the services of a financial planner.
 Centrelink's Financial Information Service.
Helpful contacts are listed in the Resources section.

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Legal arrangements in the early stages of dementia
If unsure as to whether what has been planned and is in place is sufficient or not, seek
further legal advice.

Enduring Guardianship The Guardianship Act (NSW 1997) provides the opportunity for people affected bydementia to appoint an enduring guardian.
 This can be arranged in the early stages of the dementia so that another person canmake lifestyle decisions on behalf of the person, if he/she is unable to make thesedecisions themselves.
These decisions can include: Where the person lives. For example, a hostel or nursing home.
 What health care is received. For example, treating doctor, community health care.
 What personal care services are arranged. For example, home support services.
 Subject to the provisions of the Guardianship Act, consent for any minor or major
treatments.
An Enduring Guardianship application form needs to be signed by the person appointing
the enduring guardian, the person being nominated and an authorised witness (who must
be a solicitor, barrister or clerk of the Local Court).
Enduring guardianship does not cover: Wills.
 Voting rights.
 Consent to marriage.
 Managing finances.
 Overriding the person’s objections to medical treatment.
The person with dementia can appoint an enduring guardian, but they must have thecapacity to understand what they are doing.
Further information about Enduring Guardianship can be obtained by contacting either the Dementia Helpline,or the Guardianship Tribunal.

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Advanced health care directives
 This is a document by which a person gives instructions about future health care. It
comes into effect only when the person is no longer capable of making their own
decisions. An example of this is whether or not the person chooses to have a life
support machine switched off, and under what circumstances.
 In NSW, advanced health care directives are not backed by legislation, unless they
form part of the appointment of an enduring guardian.

Obtaining legal advice
This can be obtained from the following services: Community Legal Centres – free or at low cost.
 Private solicitors.
 The Public Trustee.
 Chamber Magistrates – at most local courts.

Living arrangements
In the early stages of dementia, usually the best arrangement is for the person to continue
living in their own home. This is because the person’s home is usually the place that ismost familiar to them, and can offer significant environmental support. It may be helpful tochange or modify the layout of furniture, appliances or amenities to make it easier for
managing at home safely. As the dementia progresses other changes may need to bemade to take into account the person’s changing needs. For example, putting picture signs
on doors to remind the person of the room’s function.
For further information about creating an environment that is optimal for the person with dementia, see ourrange of Helpsheets relating to The Environment and Dementia.

Social activities for the person with dementia
Where possible, the person with dementia is to be encouraged to continue with activities,
he/she has found enjoyable and interesting. If it becomes more difficult to continue withthese activities, consider finding a volunteer, through a local municipal council community
services department or church group. The volunteer could assist and accompany the
person in continuing with these activities.
Some regional areas provide Day Centre activities.

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SIGNPOSTS Contact Dementia Helpline or Regional Dementia Advisor (listed in the Resources
section) for further details.

Getting a break – using respite care
Caring for a person with dementia can be a daunting and sometimes overwhelming
responsibility. It is useful for the carer to have a break from these responsibilities, to havea rest, go out, attend to business or go on a holiday. Many carers find that a regular breakallows them to recharge and avoid ‘carer burnout’. Others continue to work and findrespite care to be valuable. It usually has the secondary effect of providing the person withdementia the opportunity to socialize and meet other people. In rural NSW, finding andusing these services can be difficult but there will be some available.
To find out what respite options are available contact the Carer Respite Centre, which has been specificallyfunded to let you know about what is available. It may also find it helpful to read a copy of the Helpsheet
Making the Most of Respite Care. Please see the Resources section for more information.

Residential care
As the illness progresses, it may be necessary to consider other options for caring for the
person outside of their home.
Making the decision to find an alternative form of accommodation is a very difficult
decision for the family. If family members are prepared ahead of time the decision will bea little easier. Spending time learning about residential care options before the service isneeded can be helpful. Knowing about the services, government policies and costs ofresidential care beforehand can help families making this decision especially if thedecision has to be made quickly.
In the early stages of the disease, the person with dementia may express his/her own
wishes as to where they might want to live should it become necessary to move in toresidential care. Possible options include hostels, nursing homes and dementia specificunits. To access information about Residential Care, contact Aged Care Assessment Team(ACAT), your General Practitioner, the Dementia Helpline or Regional Dementia Advisor.
For further information about deciding on residential care, please see the range of Helpsheets relating to
Residential Care and Dementia. For information about how to obtain a copy of the Helpsheets, please see theResources section.

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RESOURCES TO ASSISTALZHEIMER’S AUSTRALIA NSWInformation
An extensive library provides a range of journals, videos, books and articles. These canbe accessed by contacting us. The librarian will mail items to members across NSW.

Contacting Alzheimer's Australia NSW and the Library & Information
Service
Alzheimer’s Australia NSW
PO Box 6042
North Ryde NSW 1670
Telephone: 02 9805 0100 (reception)
Fax: 02 9805 1665
Telephone: 02 9888 4218 (Librarian)
Email: library@alznsw.asn.au
Website: www.alzheimers.org.au
A range of specialist books are available to buy.
Helpsheets, provided free of charge to carers, contain information on many aspects ofdementia care.

Free Dementia Helpline 1800 639 331
Professional and trained volunteer counsellors provide information about dementia, listen
to and discuss concerns people may have about dementia and its impact on their future.
They can put people in contact with their nearest Dementia Regional Advisor, support
groups and community services.

Counselling
It is not unusual for family carers to find the diagnosis of dementia overwhelming.
Many newly diagnosed people and their family carers find it beneficial to discuss theirsituation with a professional counsellor. A counsellor will provide a safe, professional andconfidential environment to unburden thoughts and feelings, which may be difficult to talkabout with relatives or friends.
Depending on the persons needs at the time, counselling sessions can take placeeither over the telephone or face to face.

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Dementia Regional Advisors
Dementia Regional Advisors can provide information, counselling and advice and areavailable in many rural areas.

ArmidaleCommunity Health Centre

Telephone: 6776 4851

Broken Hill

Far West Area Health Service

Telephone: 08 8080 1476

Coffs Harbour

Mid North Coast Aged Care Assessment Team Telephone: 6659 9700

Dubbo

Lourdes Hospital

Telephone: 6941 8596
or 6841 8509

GosfordAged Care Assessment Team

Telephone: 4320 2644

GriffithHome Care Service

Telephone: 6964 1166

LismoreSt Vincent’s Hospital

Telephone: 6623 3313

OrangeCommunity Health Centre

Telephone: 6393 3507

Wagga Wagga The Forest Centre

Telephone: 6923 2195

Wollongong

Telephone: 4297 1011

Carunya Day Respite Centre

For further information about counselling services in your area contact the Dementia Helpline 1800 639 331(free call).

Support Groups
There are over 170 support groups meeting regularly throughout NSW. These are available
for carers to attend to share information, provide mutual support, engage in problem
solving and gain friendship. A group offers members the opportunities to share theirstories and experiences on their journey with dementia. At the same time it serves toencourage appropriate decision-making and self-care for the carer. Group members areable to talk about their concerns at the level at which they are comfortable. The emphasisin the groups is on encouragement and support.
These groups usually meet monthly in a local convenient venue for a couple of hours.
Most group leaders are health professionals, while some are family carers or volunteers
from the community.
The Dementia Helpline 1800 639 331 (free call), can provide information about a range of
dementia specific and generic support groups across NSW, and provide contact details
about those which are closest to them.

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Living with Memory Loss Program
Now being offered in some rural areas, this program is designed for people at the time ofdiagnosis or as soon as possible afterwards. This program is a seven-week psychoeducational and support program for people living with early stage dementia and theirfamilies/carers, and offers the opportunity for talking about the impact of the disease on
both the carer and the person diagnosed. Other relevant information is covered including
ideas for self-care, problem solving and managing financial and legal affairs.

Helpsheets
The Dementia Helpline 1800 639 3311 (free call) and Website: www.alzheimers.org.au canprovide information on these concise information sheets covering a wide range of topics
associated with dementia. The information sheets are available free of charge to carers.
A set of the Helpsheets is available to health professionals at a small cost.

Family Carer Education
Alzheimer’s Australia NSW conducts free seminars and discussion groups designed toassist family carers. A calendar of events is available by ringing the Dementia Helpline. In
rural areas, a Dementia Regional Advisor will have information about programs that are
being conducted locally.

ALZHEIMER’S AUSTRALIAThe National Dementia Behaviour Advisory Service 1300 366 448(Free Call)
This is a National telephone advisory service for respite care staff and carers, who areconcerned about the behaviours of people with dementia. Carers and respite care staff
can use this service.
The service provides confidential and comprehensive advice 24 hours a day, 7 daysa week.

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AGED CARE ASSESSMENT TEAMS (ACAT)The regional ACAT can assist people to obtain a range of Commonwealth funded services
to help them to continue living in their own homes. If the person has difficulty in remaining
in their own home, the ACAT can provide advice, information and assessment to enter aresidential care facility such as a nursing home or hostel.
The ACAT is usually based at a hospital, geriatric centre or community centre. The staff
can see the person with dementia, either in their own home or in hospital. The ACAT
might include doctor, nurse, social worker, occupational therapist or physiotherapist. These
teams will provide assistance to people with younger onset dementia.

Making contact with Aged Care Assessment TeamYour doctor can refer the person with dementia to the nearest ACAT. Information on thenearest ACAT is also available by contacting The Aged Care National Information Line on
1800 500 853 (free call).

CARERS ASSOCIATIONS
In each State and Territory there is a Carers Association working to bring the needs andconcerns of carers to the attention of the community as a whole including government
makers, health professionals and service providers.
Each Carer Association operates independently and offers a range of services and support.
Carers NSW also provides information about generic support groups: groups that are open
to carers of people with a range of disabilities, including dementia.

For information and support carers can call free
NSW

1800 242 636

www.carers.asn.au

ACT1800 242 636

www.carers.asn.au

Tasmania

1800 242 636

www.carers.asn.au

South Australia

1800 242 636

www.carers.asn.au

Victoria

1800 242 636

www.carers.asn.au

Northern Territory

1800 242 636

www.carers.asn.au

Western Australia

1800 242 636

www.carers.asn.au

Queensland

1800 242 636

www.carers.asn.au

CARER RESPITE CENTRES
Respite services offer a respite or break from the work of caring for someone who is
unwell. It may be for a few hours, a night or a few weeks. Respite is an important way ofrelieving the stress of being a carer, and looking after one’s own health and well being.
Respite Care Centres are Commonwealth funded, and can provide carers with:SIGNPOSTS

23 Information about respite services.
 Help to organise respite.
 After hours respite in times of crisis or emergency.
 Access to respite in nursing homes or hostels.
 Someone to ‘lend an ear’ to listen.
 Assistance with the cost of respite when needed.
 Referral to other services for on-going support.
There are 17 Respite Care Centres across NSW. For information about the closest centre,
telephone 1800 059 059 (free call).

COMMONWEALTH CARELINK CENTRES
These centres provide information about the range of services available in your communityand how to contact them. These services include: Household help.
 Personal and nursing care.
 Meal services.
 Home modification and maintenance.
 Transport.
 Disability services.
 Respite care.
 Day care and therapy centers.
 Continence assistance.
 Support groups.
 Community Aged Care Packages.
 A range of other health services such as podiatry and physiotherapy.
Also: Specific services for dementia.
 Whether there are any costs associated with the services.
 Aged Care Assessment Services.
For information about the nearest Commonwealth Carelink Centre,
telephone 1800 052 222 (free call).

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COUNSELLING SERVICES
 See Alzheimer’s Australia NSW.
 See Carers NSW.
 Lifeline 24 hour counselling. Lifeline can be contacted on 13 1114.
 Mental Health Information and Referral Service. This service can be contacted byphoning 1800 674 200 (free call).

DEPRESSION AND ANXIETY
 See Alzheimer’s Australia NSW.
 See Carers NSW.
 See Counselling Services.
 See Websites.

FINANCIAL PLANNING INFORMATION AND ASSISTANCE Financial Planning Association (FPA) Telephone: 1800 626 393 (free call)
Website: www.fpa.asn.au
 Australian Securities and Investments Commission (ASIC)
Telephone:1300 300 630 (free call) Centrelink For appointments with Financial Information Service, telephone 132 300.
For seminar bookings and information telephone 136 357
Website: www.centrelink.gov.au

GUARDIANSHIP AND FINANCIAL MANAGEMENT ISSUES

Guardianship Tribunal
The Guardianship Tribunal can assist when informal arrangements are not working for
adults who are incapable of making lifestyle or financial decisions for themselves. The
Tribunal can do this if there are disagreements with decisions that are being made on
behalf of the person with dementia, or if there are concerns that the person with dementia
is in need of protection from abuse, exploitation or an unsafe situation. It is usually the
option of last resort. The Guardianship Tribunal can appoint guardians and financial
managers and give consent for medical and dental treatments. Telephone:(02) 9555 8500
(enquiries) or 1800 463 825 (free call) Website: www.gt.nsw.gov.au

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Office of the Public Guardian
This is a separate body from the Guardianship Tribunal. When appointed by the
Guardianship Tribunal, The Office of the Public Guardian can make lifestyle decisions aboutaccommodation, medical treatment or community services, when a person lacks thecapacity to do so themselves. They do not provide case management services, or provide
substitute care. Telephone 02 9265 3184 or 1800 451 510 (free call)Protective Commissioner
When appointed by the Guardianship Tribunal, the Protective Commissioner acts toprotect the assets and legal rights of a person who is not competent to manage these.
The Protective Commissioner has the power to facilitate buying or selling a home, provide
cash flows to pay bills, make investments, monitor the person’s quality of life, supervise
and support private managers. It is a self-funded organisation, so charges a fee forservice. Telephone: 02 9265 3131

GROUPS See Alzheimer’s Australia NSW – Support Groups and Living With Memory Loss
Program.
 See Carers NSW.


See Community Services ‘Commonwealth Carelink Centres’.

INFORMATION ABOUT DEMENTIA, MENTAL HEALTH AND
RESOURCES AVAILABLE
 See Alzheimer’s Australia NSW.
 See Websites.

REGIONAL DEMENTIA ADVISORS See Alzheimer’s Australia NSW ‘Counselling’.

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Dementia
 www.alzheimers.org.au
Alzheimer’s Australia
 www.dasninternational.org/
DASN Dementia Advocacy and Support Network. ‘A worldwide organisation by and for
those diagnosed with dementia working together to improve our quality of life.’ Accessto chat rooms.

Mental Health www.beyondblue.org.au
A website with information, personal stories etc for people with depression and their families.
 www.depressioNet.com.au
A website with information, personal stories, etc for people with depression and their families.
 www.health.nsw.gov.au
The NSW Department of Health Web site. Information on everything to do with health.
 www.mentalhelp.net
The webs largest guide to online resources on mental health topics. It has extensive links.

Other Helpful Websites
 www.mja.com.au
An invaluable resource published by the Medical Journal of Australia.
 www.mydr.com.au
An Australian site providing comprehensive information on a range of health topics.
 www.carers.asn.au
Carers Association NSW

Early Onset Dementia
 www.alzheimers.org.au
Alzheimer’s Australia
 http://dementia.ion.ucl.ac.uk/candidThis is the web site for C.A.N.D.I.D. (Counselling And Diagnosis in Dementia). It
was developed to deal with the special issues that young onset dementia victims
face. It is maintained by the National Hospital for Neurology and Neurosurgery in
Queens Square London.

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COMPLAINTS

What do you do if you are unhappy with a service?
If you are unhappy with a service you have choices in the way the situation can be
resolved. Improvement of service delivery helps all service users and you have the rightto receive optimal services and advocate for people with dementia. You have several
options in acting upon your dissatisfaction:
 Gather information about the complaint, if necessary.
 Notify the service provider.
 Meet with service provider in an attempt to resolve the situation, organise a support
person to accompany you.
 Leave the organisation.
 Make a formal complaint.
Formal complaints can be made through the following organisations

Aged Care Complaint Resolution Scheme
Telephone: 1800 550 552 (free call) or write to GPO BOX 9848 Sydney NSW.
The scheme is: A free service.
 Run by the Commonwealth Government.
 Available to anyone who wants to make a complaint about any aspect of an aged careservice.
This includes residents of nursing homes and hostels and their families, staff, people
receiving community aged care packages or anyone else.
It offers confidentiality and anonymity if required.
If you are uncomfortable discussing the problem directly with the service provider you cancontact independent Complaints Resolution Scheme.

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Patient Support OfficeTelephone: Health Care Complaints Commission for your local office 1800 043 159 (freecall in NSW). TTY for the hearing impaired 02 9219 7555.
The Patient Support Office helps dissatisfied persons by providing a trained Patient
Support Officer employed by the Health Care Complaints Commission to independently
assist with concerns about all health service providers.
These range from public and private hospitals and health centres, to the individual actionsof a particular professional, therapist and any other person or organisation that provides ahealth service.

The Private Health Care Branch of the NSW Department of HealthThis branch has a Complaints Team that manages complaints about Nursing Homes,
Private Hospitals and Day Procedure Centres.
Contact: Complaints Coordinator, Private Health Care Branch, NSW Department of Health,
Locked Mail Bag 961, North Sydney 2059.
Telephone: 02 9816 0482 or 1800 809 590 (free call) Fax: 02 9816 0243
People can complain about the care provided, the standard of food, cleaning and laundry,
condition of the buildings or any other aspect of service delivery. Complaints about
individuals are referred onto The Health Care Complaints committee.

Complaints about the actions of Guardianship Tribunal staff or
Tribunal Members
You can complain about the actions of the Guardianship Tribunal or a Tribunal member(s).
You can also appeal some decisions of the tribunal. Telephone: 1800 463 928 (free call) or
02 9555 8500 or write to the Registrar of the Guardianship Tribunal, Locked Bag no.9,
Balmain NSW 2041.

The Private Guardian Support Unit
The Private Guardian Support Unit provides information and support to people legally
appointed as a guardian in NSW.
The unit is separate to the Guardianship Tribunal and is funded and staffed by the Office of
the Public Guardian. Telephone: 1800 451 510 or 02 9265 1441
Fax: 02 9283 2645 or write to: PO Box A231, Sydney South NSW 1235.

Community Legal Centres in NSW
Provide free legal advice, casework assistance, referral and information and are
independent, non-profit making organisations.
There are 36 centres in NSW. They provide general legal services and also specialise in
specific areas of law including disability rights. You are eligible if you cannot afford theservices of a private solicitor. Contact: NSW Community Secretariat on 02 9318 2355.

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