Select Committee on Health Written Evidence


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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