APPENDIX 16
Memorandum by the Alzheimer's Society
(PC 17)
1. The Alzheimer's Society is the UK's leading
care and research charity for people with dementia, their families
and carers. The Alzheimer's Society has over 25,000 members and
works through a network of over 250 branches and support groups.
It provides information and support for people with any form of
dementia and their carers through its publications, helplines,
website and local network. It advises professionals, runs quality
care services and campaigns for improved health and social care
and greater public understanding of dementia. The Society funds
an innovative programme of biomedical and social research in the
areas of cause, cure and care.
2. There are over 750,000 people in the
UK with dementia. Although drugs have been developed that can
slow the progress of the disease for some people, most forms of
dementia are terminal conditions. There is currently no cure for
Alzheimer's disease. The life expectancy of a person with dementia
is unpredictable. It is not uncommon for people to live for 10-20
years with dementia.
3. The palliative care needs of people with
mental health problems has received little attention to date.
The Society believes that many people with dementia are denied
the benefits of quality palliative care. Therefore, an inquiry
looking into equity of provision and the extent to which services
meet needs is welcome.
4. There is no clear definition of the palliative
stage of dementia. Shuster (2000) estimates that the end of life
stage can last two to three years.[4]
This uncertainty can hinder the development of palliative care
services, which are normally provided for a specified length of
time.
5. There is a need for good quality, accessible
palliative care services in the community and other care settings
for people with dementia. There are a variety of reasons that
the palliative care needs of people with dementia have not been
met including ageism, stigma, the difficulty in determining the
palliative stage of the disease, lack of staff trained in caring
for and communicating with people with dementia and unclear funding
streams.
6. Much of the research in the area of palliative
care for people with dementia has focused on those people who
have dementia as well as another terminal illness such as AIDS
or cancer. The Alzheimer's Society believes that the palliative
care needs of people with late stage dementia need to be addressed.
7. The Alzheimer's Helpline receives a steady
flow of calls about end of life care for people with dementia.
The majority of these request advice and support on how to ensure
that medical care enables a person to die with dignity. Carers
are frequently distressed by the provision of care for someone
with dementia. The quality of palliative care within care homes
for example is extremely variable and dependent to a considerable
extent on the relationship between the home and the local GP,
the expertise of staff and the quality of interagency working.
8. Treatment decisions for people with advanced
dementia are complex. It is always difficult to determine quality
of life and it is particularly problematic for people who have
lost the ability to communicate. The Society believes that in
the advanced stages of dementia quality of life rather than length
of life should be prioritised. Good palliative care is often the
most appropriate intervention for a person with profound dementia.
9. One of the reasons for the lack of palliative
care services for people with dementia is that dementia has been
perceived to be a condition for which little can be done. Advances
in dementia care have demonstrated that there is much that can
be done to improve a person's quality of life at every stage of
their illness, including the later stages. Good quality palliative
care shares many of the same principles as person centred care
and each approach should learn from the other.
10. Dementia is often not perceived to be
a terminal disease and there is significant underreporting of
dementia as the cause of death on death certificates. Some studies
suggest that as many as two-thirds of people who die of dementia
do not have dementia recorded on their death certificate.[5]
Although this is slowly changing, the lack of recognition of dementia
as a terminal disease inevitably means that the palliative care
needs of this group will not be met.
11. Research demonstrates that pain is not
palliated in people with dementia.[6]
It is well established that pain is unrecognised by staff caring
for people with dementia. It may be perceived that people with
dementia do not feel pain in the same way as other people, although
it is hoped that this type of perception is rare these days. Lack
of skill in communicating with people with dementia is likely
to lead to pain being unrecognised and ignored. Standard pain
assessments cannot be used. Health care staff will need to spend
time developing methods of communication so that they can better
relieve pain suffered by people with dementia. Developing effective
ways of assessing pain in people with dementia and dealing with
it should be a priority.
12. Pain may result in behaviour that staff
perceive as challenging and people with dementia may not be receptive
to the non-pharmaceutical approaches normally adopted by palliative
care staff.[7]
However, as palliative care services become more widely available
for older people it is inevitable that more people with dementia
will access them. Staff training and sharing knowledge between
staff working in dementia care and in palliative care is therefore
essential. Staff in nursing and residential homes, other continuing
care facilities and inpatient psychiatric services should be encouraged
to access specialist palliative care expertise, skills and advice
to complement their use of the palliative care approach.
13. Involving the carer at all stages of
the illness may help to overcome communication problems as their
carer is likely to have a better understanding of the person with
dementia and can recognise when they are in pain or distressed.
Their involvement is essential at all stages of the disease.
14. People with dementia and their carers
should be able to choose the location in which they receive palliative
care. Outreach services should be available, as many people with
dementia would prefer to die at home. Difficulty in accessing
specialist equipment and other services mean that people with
dementia have not been able to spend their last months at home
and die there, as they would have chosen. Services that are accessible
for people with dementia in care homes must also be available.
Moving from a familiar location can be confusing and distressing
for people with dementia so it is particularly important for services
to be flexible. Examples of good practice exist and carers report
the comfort that good palliative care teams can provide.
15. More work needs to be done on determining
the most effective use of palliative care services for people
with dementia. Effective interagency work could lead to better
care packages and clearer patient pathways. Community mental health
care teams, including those working with older people, should
develop links with palliative care providers within their localities
and vice versa.
16. Palliative care services for people
with dementia should be funded by the NHS. However, as the Health
Services Ombudsman has shown, people with dementia all too frequently
continue to pay for services to meet their palliative care needs.
February 2004
4 Shuster JL, 2000, Palliative care for advanced dementia.
Clinical Geriatric Medicine. 16: 373-86. Back
5
Morgan K, Clarke D, 1995, To what extent is dementia underreported
on British death certificates. International Journal of Geriatric
Psychiatry. 10: 987-90. Back
6
Lloyd-Williams M, 1996, An audit of palliative care in dementia.
European Journal of Cancer Care. 5:53-5. Back
7
National Council for Hospice and Specialist Palliative Care Services
and Scottish Partnership Agency for Palliative and Cancer Care,
2000, Positive Partnerships: palliative care for adults with severe
mental health problems, London. Back
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