Alzheimer’s Australia/ 1
Acknowledgements
Alzheimer’s Australia would like to acknowledge and thank the author of this paper
Professor Jenny Abbey
Professor of Nursing (Aged Care), Queensland University of Technology
and The Prince Charles Hospital Health Service District.
The author would like to thank all at Alzheimer’s Australia who reviewed early drafts ofthis paper and Brian Abbey and Deborah Parker for their invaluable input.
The opinions expressed in this paper are those of the author and not necessarily those of
Alzheimer's Australia.
This publication was funded by an unrestricted grant from Lundbeck Australia Pty Ltd.
The photographs were provided by Lynton Crabb photography.

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Contents
Acknowledgements and disclaimer

1

Introduction

4

Palliative Care and Dementia Care

4

What is Terminal Dementia?

5

Planning Palliative Care

6

Care Environment

7

Negotiating Care with Service Providers

8

Symptom Management

8

Pain

9

Nutrition

10a. Benefits of Artificial Nutrition and Hydration (ANH)11b. Disadvantages of Artificial Nutrition and Hydration (ANH)11

Hydration

12

Antibiotics

12

Provision of Personal Care

13

Invasive procedures and restraint

13

Personal Comfort Measures

14

Personal Hygiene

14

Mouth Care

14

Difficulty Breathing

14

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Personal Comfort Measures (ctd)Skin Care

15

Bowel Movement

15

Mobilisation

15

Personal support

15

Spiritual Care

16

Cultural Issues

16

Death

17

Family Carers and Decision Making

18

Conclusion

18

References

19

Glossary of Terms

21

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Introduction
This paper was commissioned by Alzheimer’s Australia to promote discussion by people
with dementia, their families and carers of the issues that may be faced as people withterminal dementia move towards death. A palliative care approach will also beappropriate when a person with dementia has another terminal condition.
This paper•

Sets out why palliative care can be important as death approaches;•

Describes how a person with dementia can be assisted to die in comfort and with
dignity;•

Emphasises that flexibility is needed to respond to the unique needs of the individual;
and•Emphasises the importance of involving the family and carers and attending to theirseparate needs throughout this critical time.

Palliative Care and Dementia Care
According to the World Health Organisation (WHO):
Palliative care is the active total care of patients whose disease is not responsive tocurative treatment …The goal of palliative care is the achievement of the best possible
quality of life for patients and their families.
Hence high quality palliative care is person centred and based on forming a partnershipamong the service providers, the person with dementia and the family and carers.
Treatment focuses on palliating or relieving the symptoms experienced by a person withdementia towards the end of their life rather than on curing the condition(s) that is
causing their death. For the family and carers, palliative care concentrates on providing
emotional and practical support before and through the death of the person withdementia and the ensuing period of grieving. Palliative care should not be confused witheuthanasia, a term which is associated with interventions aimed at hastening the deathprocess.
Palliative care has traditionally been directed to meeting the needs of people withterminal cancer. It is now increasingly recognised as the best approach to caring forpeople with a range of terminal illnesses, including dementia.

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Even though research has revealed some recurrent patterns in the phases of dementia
and the time between diagnosis and death, the symptoms of terminal dementia do notoccur in a uniform or predictable manner and variations between individuals will be quite
marked. As a consequence, the emphasis of palliative care is on flexibility in order tomeet individual needs, using person-centred planning. Indeed, being willing to respondflexibly to the unique needs of each individual is the cornerstone of high quality carethroughout the dementia journey.

What is Terminal Dementia?
Some general groups of symptoms and behaviours have been identified that can signify
the terminal phase for a person with dementia (Shuster 2000) (Abbey 2003):



There is often a progressive worsening of memory resulting in increased confusionand disorientation;Speech and the ability to communicate often deteriorate to the point where theperson may eventually become incoherent or completely mute;Behavioural changes may occur which can lead to a person being belligerent,
sobbing or screaming, or strikingly passive and quiet, immobile and detached;The person’s ability or desire to move independently can decline, leaving thembed/chair bound;The person’s capacity for self-care progressively diminishes, making them totallydependent on carers;

The person’s ability to eat independently gradually disappears, often in association
with a diminished ability to swallow and increased risk of aspiration. A progressive
loss of appetite almost always follows; and

Other complications can include bowel and bladder incontinence, muscle atrophy andcontractures, increased susceptibility to delirium, recurrent infections, pneumonia,
pain, peripheral shutdown, bed sores and general skin breakdown. Delirium canresult in increased restlessness and agitation.

The appearance and prominence of these symptoms will vary between individuals
because of differing disease processes, individual differences and co-existing conditions
such as cardiac failure, diabetes or cancer.

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Planning Palliative CareHigh quality palliative care in terminal dementia is facilitated when both the person withdementia and their family have together explored issues related to treatment andmanagement. Often the need for an enduring power of attorney for financial matters will
be discussed and acted on. It is also important to clarify the person’s wishes regarding
their future health care, as this can provide much-needed guidance when they are nolonger capable of expressing an opinion.
Each State and Territory jurisdiction has a different approach to these issues. This
includes different forms of documentation for this purpose, called, for example, anEnduring Power of Attorney, Medical Power of Attorney, Advance Directive, Enduring
Guardianship or Living Will. An Advance Directive (AD) is a statement by a competentperson expressing their wishes in relation to their future health care, if they are not able
to do so themselves at that time. Advance Directives have arisen in the context of anincreasing need to respect and promote patient wishes and autonomy.
Further information about advance care planning is contained in Alzheimer’s Australia’s(AA) position paper on Legal Planning and Dementia, available on the AA website atwww.alzheimers.org.au/legal.
If an adult has the capacity to make the decision him or herself, the law is clear.
A competent adult may refuse treatment even if that results in his or her death. Indeed,
if that adult continues to be treated against clearly stated wishes, medical staff will becommitting an assault and could be liable to civil or criminal prosecution. Application of
the law is far more complex when the person has impaired cognitive ability and it is often
in an acute hospital setting where issues surrounding people's wishes emerge. Difficult
debates can occur when decisions such as the need for major surgery, painful invasive
procedures, or the possibility of artificial nutrition and hydration are discussed.
Of particular concern for service providers and family and carers is the dilemma that
occurs when an AD rules out treatment which everyone believes is in the best interests ofthe person with dementia, or, when there is a difference of opinion about what would bein a person's ‘best interest’. In spite of many efforts to improve the wording and format
of ADs they are often still problematic in guiding clinical decision making. However, theyremain the only way a person with dementia can leave information about their own
wishes to be followed.

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For some families sanctity of life may matter above all, and above what others may see
as quality of life. These beliefs may mean that what service providers from one cultural
background see as being evidence-based care and promoting the person’s best interest
may not appear in the same light to families and carers from a different background.
Satisfactory outcomes for all parties will usually be more likely if such key issues can betackled sooner rather than later once the diagnosis of dementia is confirmed.
It is important that families have the opportunity to ensure that any documented wishesof the person with dementia, or any that can be established as having been conveyed
informally, are made known to all family members, carers and service providers. Where
no wishes have been recorded or made known it may fall to the families and carers todecide which care options should be adopted. Best practice guidelines for palliative caresuggest that a case conference should be held, involving families and carers, the personwith dementia if appropriate, and all service providers, to communicate and ensure that
all wishes are met or satisfactory arrangements negotiated. Case conferences should
work out clear long and short-term goals to inform service providers, family and carers
about the processes which will provide comfort, the actions to be taken if emergencies
arise and the purpose, type and limitations of any ongoing treatment. This process
supports families and carers, assists in clarification of any issues and provides ongoingemotional support.

Care Environment
The damage in a person’s brain from dementia can cause changes towards the end of life
which lead to disorientation and confusion. It is increasingly recognised that a personwith dementia is better cared for within a familiar environment (Hurley & Volicer 1999).
Consequently, it is better for the person to remain where they are receiving care, rather
than being transferred to an acute care (eg hospital) setting, whenever that is possible.
A person with terminal dementia often will not understand the reason for their admission
to an acute care system. The acute care environment is not only unfamiliar, but usually
very noisy and extremely busy. These environmental factors, coupled with invasive
procedures such as blood tests and x-rays, can trigger painful feelings and associatedbehaviours. These can include fear, anxiety, resistance, calling out, and agitation.
Additionally, treatments such as intravenous therapy (drip) and catheterisation can cause
discomfort and distress.
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In an acute setting, the combination of behavioural changes in the person with dementia,
environmental constraints and staffing issues, may result in the person being chemically
and/or physically restrained. The enforced immobility reduces quality of life and can leadto further complications, such as an increased risk of infection, pressure areas,
contractures and injury.
The person’s quality of life may be compromised as a consequence of the characteristicsof the environment in which care is provided. Therefore, the choice of care setting isimportant to achieve the goal of best practice dementia and palliative care that maintains
the person’s quality of life.

Negotiating Care with Service Providers
Making choices about care and treatment options and symptom management can be very
difficult for family members and carers. There is a need for families, carers and service
providers to have access to support and information on possible ways of dealing withissues that arise during this difficult time.
Alzheimer’s Australia provides education services and help sheets that can assist families
and carers. Additionally, the Australian Government’s publication Guidelines for a
Palliative Approach in Residential Aged Care (2004) is available from the National
Palliative Care Program by calling 1800 020 787 (Freecall) or can be downloaded fromhttp://www.health.gov.au/palliativecare
Care and treatment options and their ramifications should always be discussed by all
those concerned, including the person with dementia, if at all possible, and at the earliest
appropriate time.

Symptom Management
Approaches to symptom management will depend on the stage of the illness and any comorbidities. The symptoms described below are not the only ones that will occur for
people with terminal dementia, but are the ones that often require difficult decisions to
be made.

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Pain
There is strong evidence of under-recognition of pain in people with dementia. An
accurate diagnosis of pain is notoriously difficult for a population where individuals
cannot tell you when, where, why or how much they are hurting. A change in the
person’s behaviour, which may indicate pain, is often noticed by family and friends. The
intimate knowledge of the person with dementia that families and carers can provide is avaluable resource in assisting service providers in the difficult task of distinguishing
between physical pain and other causes for distress.
Some of the main observable indicators of pain are:

facial expression (eg. grimacing) or body language (e.g. restlessness, agitation,
guarding a part of the body, rocking, muscle tenseness);change in vital signs such as increase in pulse rate, breathing rate, blood pressure
and sweating;

repetitive noises or inconsolable moaning.

Any change in the person’s usual behaviour may possibly denote pain and should be
investigated.
Efforts are being made by researchers to address the problem of under-recognition of
pain. Pain scales are available that record, in an objective manner, the signs andsymptoms that are likely to indicate the existence of, and gauge the intensity of pain thata person with terminal dementia is experiencing. It is important that there is an ongoingand systematic approach to recording, assessing and managing pain. Family and carers
should be able to access a record of the pain levels of the person with dementia, together
with the record of the effectiveness or otherwise of any therapeutic interventions aimed
at relieving pain (Australian Pain Society 2005). Further information is available in theAustralian Pain Society resource, Pain in Residential Aged Care Facilities: Management
Strategies, which is available at http://www.apsoc.org.au/
As with all treatment options, pain management strategies must be provided in responseto an individual’s assessed wishes, likes, preferences and/or needs. High touch pain
management strategies are non-invasive comfort measures that, perhaps in conjunction
with pain medication, can relieve physical pain and discomfort.

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These strategies include: repositioning, verbal reassurance and support, soothing touch,physical exercise/movement, cold or heat therapy, massage, music, hand activity (e.g.
stress balls, worry beads, play dough). However, in most cases the use of analgesic
medication will be the main method chosen to relieve pain.
The core principle behind good pharmacological intervention is to use analgesics
regularly, not just as required. The lowest dose possible that provides pain-free comfort
should be prescribed and administered. If opiates, such as morphine, are required andthe person with dementia has been refusing food and become malnourished they arelikely to be particularly sensitive to this group of drugs. They consequently may require
lower doses. The side effects of opiates (such as nausea, constipation, hallucinations,delirium and agitation) can be distressing for the person and their family and carers,
while, at the same time, these could be the best drugs to provide peace and comfort.
Bowel medications may be needed even if the person is eating or drinking very little toensure that constipation does not lead to further pain (Australian Pain Society 2005).
Nutrition
A reduced desire to eat (anorexia) and difficulties with eating and swallowing are anormal part of the disease process and are often key indicators that the person is moving
towards the end of their life. When the difficult questions about eating and drinking
arise, the first issue to consider is whether the disease is causing the eating difficulties orif they are a symptom of something else that is treatable and judged to be worth
treating, after considering any side effects.
Medications, constipation, dental problems, mouth ulcers, oral thrush, infections andeven unfamiliar or disliked foods can trigger refusal of food. It is also thought that somepeople with terminal dementia may not recognise food as such any more. If no othertriggers can be found and food and fluid intake continues to be problematic, weight loss
should be monitored and specialists consulted, such as a speech pathologist to assess theswallowing mechanism and a dietician to provide advice on suitable dietary supplements.
When feeding causes choking, nutrition can be supplied by liquids manipulated withthickening agents such as gelatine. A soft or pureed diet, perhaps including protein,vitamin and mineral supplements served as yoghurt, thick shakes, custard and/or
Sustagen, can be provided and spoon-feeding or adapted mugs used. Instead of threelarge meals per day, small frequent meals can be given.

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Families and carers find issues about nutrition complex. Some of the most perplexing
issues arising in end of life care are starvation and dehydration or feeling that the personwith dementia may be hungry or thirsty, and the distinction between ‘killing’ and‘allowing to die’. They are further complicated by the way in which clinical/technical,
emotional and philosophical considerations are intertwined.
These complexities cannot be avoided if the treatment option of artificial nutrition andhydration (ANH) is raised. The evidence on the use of ANH in the care of people withterminal dementia is still accumulating, but at present the body of expert opinion rejects
rather than favours the use of ANH for people with terminal dementia in any but special
or unusual circumstances or any choice related to cultural beliefs (Finnucane et al 1999).
However, families and carers are able to make the decision more comfortably if they
have enough information.
(a) Benefits of Artificial Nutrition and Hydration (ANH)
ANH is an aggressive nutritional treatment that has been demonstrated to assist in
reducing septic complications post injury or surgery, if a person is unable to manage
normal nutritional intake. It has been used to reduce the complications associated withburns injuries and aids wound healing. ANH in dementia care is commonly dispensed
through a percutaneous endoscopic gastrostomy tube (PEG).
ANH has been promoted as improving nutrition; maintaining skin integrity by improving
protein intake; preventing aspiration pneumonia; minimising suffering; improving
functional levels; and extending life. There are inadequate studies however, toconclusively demonstrate these claims in respect of dementia (Milne et al 2005).
(b) Disadvantages of Artificial Nutrition and Hydration (ANH)
A number of studies have shown that tube feeding is ineffective in preventing
malnutrition, preventing pressure sores or hastening wound healing, preventing
aspiration, improving functional levels or extending quality of life. These studies showedthat there were many adverse consequences to PEG feeding for an older person withterminal dementia. These included in the short-term: pain, peritonitis, gastro-intestinal
bleeding, cellulitis, perforation, aspiration, gastro-oesophageal reflux and agitation. Longterm consequences were dislodgement of the tube and use of restraint, clogging,diarrhoea, faecal incontinence and aspiration. There is a higher incidence of pneumonia
in tube fed patients in comparison to non-tube fed.

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There is evidence from a recent small study, to show that there is no survival benefit forpeople with dementia who receive ANH (Murphy & Lipman 2003).
When considering the ANH option, it is important to remember the fundamental principleof quality palliative care is that the benefit of the intervention must be greater than theburden of the intervention for the person receiving treatment. This approach will help
carers to come to decisions which are in the best interest of the person with dementia(Milne et al 2005) (Li 2002) (Byrd 2004) (Eggenberger & Nelmes 2004).
Hydration
Dehydration is the loss of normal body water and should not be confused with thirst. The
effects of dehydration in the terminally ill are that pulmonary secretions decrease andthere is less coughing. Shortness of breath, congestion, nausea, vomiting and abdominal
pain is reduced and there is less urinary output, resulting in fewer linen changes and lessdisturbance for the person. When dehydration occurs, the person with terminal dementia
may suffer from a dry mouth, which can be treated with mouth care and by giving ice
chips to suck. Sometimes a person may suffer from an electrolyte imbalance, which canlead to muscle spasms and an altered level of consciousness. This can be treatedpalliatively with antispasmodics or sedation (Billings 1985). Dehydration can lead to the
production of natural analgesics, specifically, the body's breakdown of fat results in
ketosis and other chemical changes which provide a feeling of calm and comfort.
However, some families and carers may choose the option of fluids being delivered
through artificial means, such as subcutaneous therapy. There is inconclusive evidenceof any benefits to be derived from this process (Department of Health and Ageing 2004).
Any decision about rehydration must focus on choices that the person would have madeor what family and friends consider is in the best interests of that person. This isespecially so where there are cultural and religious sensitivities. Again, families andcarers need access to the most comprehensive evidence available so that they can makedecisions in a case conference situation with all service providers involved.
Antibiotics
Questions may arise about the appropriateness of subsequent courses of antibiotics whena person with terminal dementia has had recurring infections.

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There has been little research and debate about the use of antibiotic therapy for people
with terminal dementia, partly because of the ethical difficulties in denying antibiotics toa randomly selected group of people with dementia in a research trial situation.
Researchers conclude that it is extremely difficult to arrive at safe and universally
applicable answers to the question as to whether to prescribe antibiotics: decisions need
to be taken in context and on an individual basis, although some work has shown that‘aggressive medical treatment of infections does not affect the progressive course ofdementia and has a limited effect on mortality rates’ (Hurley et al 1996).
It is possible that the other methods such as the use of sponging, use of aspirin to bringa person’s temperature down, massage, analgesics and low-flow oxygen may be of more
comfort during a fever, when antibiotics are unlikely to be effective, or when a person isunable to take medication by mouth.
In relation to all the circumstances described above, the focus should be on the key
palliative care questions: How useful is the treatment for the person with dementia?
What choice would best promote the comfort of the person with dementia?

Provision of Personal Care
The provision of personal care, as well as some medical procedures, may cause distressand discomfort to the person with dementia.
Invasive procedures and restraint
Invasive procedures such as having a drip, catheter, oxygen can be far more frightening
and upsetting for a person with dementia than for someone who knows what ishappening and why. It is often necessary to restrain an individual with dementia who isundergoing an invasive procedure, as they may want to remove the uncomfortable tubes
invading their body.
The Australian Government’s resource, Decision-making tool: Responding to issues ofrestraint in aged care has been developed to assist staff and management in residential
aged care facilities to make informed decisions in relation to the use or non use ofrestraint in responding to behaviours of concern. This resource may be helpful and isavailable at http://www.health.gov.au/internet/wcms/publishing.nsf/Content/ageingdecision-restraint.htm.

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Personal comfort measures
Palliative care concentrates on providing comfort in an active, not passive way, andalternatives to some invasive procedures can be found, rather than no action being
taken. All involved in decision making need to be flexible, sensitive and realistic whenattending to the physical comfort needs of the dying person.
The following areas are all seen as likely to need careful thought and attention:
Personal hygiene: Will the person’s needs for personal hygiene be best met without
using a shower or bath? Considerations in a palliative approach are privacy, pain andenergy levels, as fatigue is often an issue for the dying person. Using bed baths, bagbaths, hot towel baths and/or disposable cleansing wipes may be more appropriate thangiving a shower or bath.
Mouth care: This is always important, but especially when the person is refusing fluids,
as a dry mouth is often reported. Using swabs moistened with water, continuing cleaningof teeth, providing regular sips of water (if the person is able to tolerate this withoutchoking), ice chips or an ‘ice lolly’ can relieve this symptom. Also, attention to dry lips
will prevent cracked sore lips.
Difficulty in breathing: Dyspnoea is the medical word for the uncomfortable breathingthat can characterise a further stage towards death. It can be frightening for everyone
watching, and distressing for the person with dementia if air hunger triggers a panicky
feeling. It usually helps if the person is positioned in a semi- upright position. Oxygen
may be used if prescribed by the doctor and tolerated by the person with dementia. A
person with dementia may pull out the nasal prongs delivering oxygen or pull off themask, which may be distressing for families and carers to watch. However, most people
do not need continual oxygen where optimal management with morphine and/or
tranquilisers and a respiratory sedative is used (Department of Health and Ageing 2004).
Suctioning the upper airways if secretions are thick may be an option, but again, may be
uncomfortable for the person with dementia. Medications that can reduce excess
secretions may be used instead.

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Skin care: Special vigilance is needed when a person’s functional ability deteriorates andthe person is bed/chair bound. Providing relief of pain caused by skin breakdown may be
more considerate of the person with terminal dementia than many changes of dressings
which could be part of any attempt to halt the breakdown process. Best practice would
suggest using the person’s preferred resting position where possible, particularly in thelast days of life when preventing pressure sores, or healing of wounds, is no longer apriority.
Preventing skin breakdown is also considered best practice, and while this is often very
difficult for people approaching death, using appropriate pressure relieving devices has
been identified as a means to improve prevention of pressure ulcers (Santamaria 2005).
The use of these devices may reduce the pain associated with pressure ulcers and also
reduce the level of disturbance from frequent repositioning
Bowel Management: This must be maintained up until the point of a person’s death.
Many medications commonly used at this stage of life are capable of causing diarrhoea orconstipation. The side effects and the necessity of continuing these medications need tobe discussed with the person’s medical practitioner.
Mobilisation: Getting people out of bed helps to prevent pneumonia, reduce
contractures and prevent pressure sores. Importantly, it keeps the person positive andinvolved. However, a person approaching death may be more comfortable in bed rather
than sitting in a chair. Time saved by not getting the person out of bed can then be
spent on providing comfort care that is based on assessing and respecting theindividual’s needs and providing interpersonal communication if this is still possible in any
sense. Alternative measures, depending on the individual involved, might include gentle
massage, aromatherapy or playing special music that the person enjoyed in their earlier
life.
Personal support: Even though it is difficult to communicate with a person withdementia who is approaching death, the physical presence of another person has beenfound to provide comfort (Department of Health and Aged Care 2000). Often a family
member or friend will fulfil this role; however, if this is not possible consideration should
be given to a volunteer who has appropriate and specific training to be with the person
who is dying.

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Spiritual Care
Attending to the spiritual needs of the person with dementia and their family and carers
is an important component of palliative care. Spirituality has been defined as that qualityof curiosity in people that seeks to find meaning by pondering such questions as•

Who do I belong to?

•

What’s the purpose of my life?

•

What can I hope for? (Rumbold 2003)

Spirituality may find expression through the rituals and practices of religion, but for manyit has other associations or avenues of expression. Similarly, spirituality may have God
or a supreme being as its centre of focus, but need not.
Spiritual care may involve practices where the privacy of the person with dementia andtheir family and carers needs to be respected. Families and carers should feel free toseek opportunities for such practices to continue as needed. Spiritual counselling andsupport are essential to comprehensive palliative care and may help to provide rites andrituals that organise and offer symbolic meaning to individuals facing death. It isconsidered best practice to have a pastoral care worker who has experience andknowledge about spiritual issues as part of the service providers’ team. Once again,
service providers, families and carers must always remain sensitive to differences
between individuals.
While ensuring that opportunities for counselling and support are readily available tothose requiring them, it must be remembered that an unwanted visit from a pastoralcare worker may, for some people, be seen as a presumptuous intrusion. It should berecognized that there will be no one approach that will suit all cases, given the diversityof personal belief and varying levels of comfort in confronting these great human issues.
This explains the need for all planning and provision of care to remain firmly personcentred.

Cultural Issues
Consideration of cultural preferences and issues throughout the progress of the illness isalso important. Families and carers need to understand the reasons for the medical andcare approaches proposed and service providers need to have support in understanding
cultural issues. The language used by a person with terminal dementia may revert to the
one they used in childhood but this may not reflect their recent cultural practices andtastes.
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Multicultural or culturally specific organisations or advisors within the health department
or health care facilities can provide general information and support to care staff inunderstanding the needs of people with dementia who are from culturally andlinguistically diverse backgrounds.
The need for service providers to understand the health and caring perspectives ofdifferent cultural groups is especially important in the context of a palliative approach.
It is often at this stage that families and carers turn to culturally familiar and comforting
beliefs and practices. When service providers respond sensitively to the cultural beliefs
and practices of residents and families, satisfaction with end-of-life care is increased(Department of Health and Ageing 2004).

Death
As the time of death draws near it is appropriate that arrangements are made for family
and friends to stay with the person with terminal dementia if they so wish. A privateroom is the best choice. Families and carers need to understand that the person can stillhear them and may understand what they are saying. They may also need reassurance
that it is acceptable to touch, hug or hold the person. It is not uncommon at this stage
for there to be a moment of lucidity, where, for example, the person with dementia
seems to know someone they had not recognised for months. These episodes, if they
happen at all, last for a very short while. They do not indicate any change in the courseof the disease and do not indicate any postponement of the person’s death.
The exact moment of death itself can be difficult, not only because it signifies the final
departure of the person with dementia from the lives of family, carers and service
providers, but also because some of the physical signs and changes that may occur canbe confronting. Gurgling sounds may be heard and the loss of the last vestiges of muscle
control may be noted. Breathing will cease, but the eyes may remain open, with thepupils fixed and dilated. Other changes may occur, but there is no set pattern. In suchcircumstances it is important that the service provider is knowledgeable enough to help
the family and others present to understand that what they are seeing is the normalchange process associated with the arrival of the moment of death. Such support
mechanisms are very important at this moment.
Following the death, families and carers may feel sadness, grief or guilt, relief, or any
combination of these and other emotions. Service providers who may have cared for the
person for a long time may also feel a sense of loss.
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Memorial services help service providers deal with the grief they often have to face.
Alzheimer’s Australia provides access to counselling for families and carers and continues
to provide support after the death of a person with dementia.

Family Carers and Decision Making
The process of a palliative approach requires families and carers to make numerous
emotionally charged decisions. In spite of recent breakthroughs in the treatment andunderstanding of dementia, there is still no cure and no means of significantly delaying
death. Acceptance of these inescapable features of dementia assists the growth ofunderstanding among persons diagnosed and their families and carers that there may be
a need for palliative care in the terminal stages of the illness.
Discussing palliative care while the person is coming to terms with a diagnosis andsubsequent loss of abilities is difficult. Once the person has adjusted to the diagnosis it
may be time to ask ‘now what does that mean for the way ahead?’ Thus the emphasis in
this paper has been on preparation for all concerned, including obtaining counselling or
education where needed. Pioneering work in recent decades has shown that a dignified,
pain free and comfortable death for the person suffering from dementia is achievable andshould be the principal imperative for the caring professions, and for family and friends ofthe person who is dying. Alzheimer’s Australia has many experienced people committed
to helping those with dementia and their families and carers through this process.

Conclusion
Palliative care approaches have a crucial role to play in the care of the person withdementia who is dying and in the support and preparation of their family and carers.
This paper identifies how the person with dementia can be supported to die in comfort
and with dignity. It has also identified the importance of involving and attending to theneeds of the family and carers throughout this critical time.
Postscript
I hope that the paper assists Alzheimer’s Australia to promote discussion by people withdementia, their families and carers about the important issues that surround dementia
and palliative care.

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References
Abbey, J. 2003, ‘Ageing, dementia and palliative care’. in Aranda, S. & O’Connor, M.
(eds), Palliative Care Nursing – A Guide to Practice, 2nd edn, Ausmed, Melbourne,
pp.313-326.
Australian Pain Society 2005, Pain in Residential Aged Care Facilities: Management
Strategies, Australian Pain Society, Sydney.
Billings, J. 1985, ‘Comfort measures for the terminally ill. Is dehydration painful?’,Journal of the American Geriatrics Society, vol.33, no. 11, pp. 808-810.
Byrd, L. 2004, ‘The use of artificial hydration and nutrition in elders with advanced
dementia’, Topics in Advanced Practice Nursing eJournal vol.4, no.2, [Online] Available
at: http://www.medscape.com/viewpublication/527_index
Department of Health and Aged Care, 2000, National Palliative Care Strategy A National
Framework for Palliative Care Service Development, Department of Health and Aged
Care, Canberra.
Department of Health and Ageing, 2004, Guidelines for a Palliative Approach in
Residential Aged Care, Rural Health and Palliative Care Branch, Department of Healthand Ageing, Canberra.
Eggenberger,S.& Nelmes,T. 2004, ‘Artificial hydration and nutrition in advanced
Alzheimer’s disease: facilitating family decision making’, Journal of Clinical Nursing,vol.13, pp. 661-667.
Finucane, T.E., Christmas, C.& Travis, K. 1999,. 'Tube feeding in patients with advanced
dementia: a review of the evidence', JAMA, vol. 282, no. 14, pp. 1365-70.
Hurley, A.C. & Volicer, V. 1999, ‘Caring for patients with advanced dementia:
implications of innovative research for practice’, Innovations in End- of- Life-Care, vol.1,
no.4, [Online] Available at: http://www2.edc.org/lastacts/

Palliative Care and Dementia

February 2006

Alzheimer’s Australia/ 20
Hurley, A.C., Volicer, B.J. & Volicer, L. 1996. 'Effect of fever-management strategy on the
progression of dementia of the Alzheimer type', Alzheimer Disease and Associative
Disorders, vol.10, no.1, pp. 5-10.
Li, I. 2002 ‘Feeding tubes in patients with severe dementia’, American Family Physician,vol. 65, no.18, pp.1605-10, 1509-12.
Milne, A.C., Potter, J. & Avenell, A. 2005, ‘Protein and energy supplementation in elderly
people at risk from malnutrition’. The Cochrane Library ,Cochrane Review ID
CD003288,[Online] Available at: http://cochrane.org.au/library/library.htm
Murphy, L. & Lipman, A. 2003 ‘Percutaneous endoscopic gastrostomy does not prolong
survival in patients with dementia’, Archives of International Medicine, vol.163, no. 11,
pp. 1351-1353.
Rumbold, B. 2003 ‘Caring for the spirit: lessons from working with the dying’,
Medical Journal of Australia, vol.179, suppl. 6, pp. S11-S13.
Santamaria, N. 2005, PRIME Trial Australian Government, Canberra (Unpublished)
Shuster, J. 2000, ‘Palliative care for advanced dementia’, Clinics in Geriatric Medicine,vol 16, no 2.

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GLOSSARY OF TERMS(Note * denotes legal terms that may differ between the States and Territories.)*Advance Directive
An Advance Directive (AD) is a statement by a competent person expressing theirwishes in relation to their future health care, if they are not able to do sothemselves at that time.
Agitation
Vocal or motor behaviour (screaming, shouting, complaining, moaning, cursing,pacing, fidgeting, wandering, etc.) that is disruptive, unsafe, or interferes withthe delivery of care in a particular environment.
Air hunger
Difficulty in breathing, often associated with lung or heart disease and resulting inshortness of breath. Also called dyspnoea.
Anorexia
A reduced desire to eat.
Antibiotics
Medications that kill bacteria.
Antispasmodics
Medications to help reduce spasms, stiffness and cramps.
Aromatherapy
The use of aromatic essential oils to treat many common illnesses and disorders.
Artificial nutrition and hydration (ANH)
Administration of food and fluid supplements when food and drink cannot betaken naturally.
Aspiration pneumonia
Inflammation of the lungs caused by inhaling or choking on vomitus.
Case conference
A tool for coordinating care across a multidisciplinary team where team members,family and carers, and, if possible, the client themselves, identify and discuss thecare needs and goals relating to chronic or complex conditions and assign
interventions to particular members of the team.
CatheterA rubber or plastic tube used to withdraw urine from the bladder.
Catheterisation
The insertion of a catheter.
Chemical restraint
The use of sedatives or anaesthetics to control a person’s activity.
Co-morbidity
A medical condition that exists simultaneously with another.

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Congestion
The presence of an abnormal amount of fluid in a vessel or organ.
Contractures
An abnormal shortening of muscle or scar tissue, that results in distortion ordeformity, especially of a joint of the body.
Dehydration
Excessive loss of water from the body.
DeliriumA temporary state of mental confusion resulting from high fever, intoxication,
shock, or other causes, and characterized by anxiety, disorientation, memory
impairment, hallucinations, trembling, and incoherent speech.
Distress
A state of physical or mental suffering.
Drip
The administration of liquid substances directly into a vein. Also called
intravenous therapy.
Dyspnoea
Difficulty in breathing, often associated with lung or heart disease and resulting inshortness of breath. Also called air hunger.
Electrolyte imbalance
Lack of equality of electrolytes in the body.
*Enduring Guardianship
A person appointed as an enduring guardian can make personal decisions onanother person’s behalf, such as living arrangements, medical treatment andservices.
*Enduring Power of Attorney
A person appointed under an enduring power of attorney can make financial
decisions on another person’s behalf, for example disposing of assets, such as ahouse, or operating bank accounts.
Euthanasia
The act or practice of ending the life of an individual suffering from a terminal
illness or an incurable condition, as by lethal injection or the suspension of
extraordinary medical treatment.
Evidence based care
The process by which health professionals make clinical decisions using the best
available research evidence, their clinical expertise and patient preferences.
Functional levels
Ability to perform personal care activities necessary for everyday living, such as
eating, bathing, grooming, dressing, and toileting.
Gastro-oesophageal reflux
A condition where the muscular ring at the lower end of the oesophagus isabnormally relaxed and allows the stomach's acidic contents to flow back or'reflux' into the oesophagus.

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GIT Bleeding
Loss of blood from the gastro-intestinal tract.
Hallucinations
False or distorted perception of objects or events with a compelling sense of theirreality.
Hot towel baths
Soft towel bed-bathing method as an alternative to a shower or conventionalbath.
Impaired cognitive ability
Impairment of mental abilities such as judgment, memory, learning,
comprehension, and reasoning.
Intravenous therapy
The administration of liquid substances directly into a vein. Also called a drip.
KetosisA pathological increase in the production of ketone bodies.
*Living Will
A legal document that expresses an individual’s decision on the use of suchmatters as artificial life support systems.
Low-flow oxygen
Administration of oxygen at concentrations greater than room air.
Malnutrition
The cellular imbalance between supply of nutrients and energy and the body's
demand for them to ensure growth, maintenance, and specific functions.
*Medical Power of Attorney
The title given to a person who is legally appointed to make decisions relating to
the medical care of another.
Mortality rates
The ratio of total deaths to total population in a specified community or area overa specified period of time.
Muscle atrophy
Muscle atrophy refers to the wasting or loss of muscle tissue resulting from
disease or lack of use.
Muscle spasms
Shortness in a muscle or group of muscles that cannot be released voluntarily.
Nasal prongs
Catheter used to delivery oxygen through the nose.
NauseaA feeling of sickness in the stomach characterized by an urge to vomit.
NESB/CALD
People of Non-English speaking backgrounds or the more recent term is people
from culturally and linguistically diverse backgrounds.

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Opiates
A term used to describe drugs that are derived from the juice of the opium
poppy.
Pain
An unpleasant sensation occurring in varying degrees of severity as aconsequence of injury, disease, or emotional disorder.
Palliative care
Palliative care is the active total care of patients where disease is not responsive
to curative treatment.
Percutaneous endoscopic gastrostomy (PEG)
A surgical procedure for placing a feeding tube in the abdomen.
Perforation
An abnormal opening made by rupture or injury.
Peripheral shutdown
Decreased blood supply to the body’s peripheral organs i.e. arms, legs.
Peritonitis
Inflammation of the peritoneum, the membrane that lines the abdominal cavity
and surrounds the internal organs.
Person centred care
Care that focuses on the person’s individual needs as paramount.
Pharmacological pain management
The administration of medication to alleviate pain.
Physical restraint
Devices used to ensure safety by restricting and controlling a person’s movement.
Quality of Life
Defined as an individual’s perception of their position in life in the context of theculture and value systems in which they live, and in relation to their goals,
expectations, standards and concerns. It is a broad-ranging concept,
incorporating in a complex way the person’s physical health and psychologicalstate, level of independence, social relationships, personal beliefs and relationshipto salient features of the environment.
Sanctity of life
The value of life exceeds all other values. No other value overrides the value oflife except possibly more life.
Starvation
A condition in which deprivation of food has forced the body to feed on itself.
Subcutaneous therapy
Fluid provided into the subcutaneous (fat) tissue.
Suctioning
To draw away or remove by the force of suction.

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