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Dementia - Management
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What are the principles of palliative care and end-of-life issues for people with dementia?
- Advice should be sought, either from a GP with a special interest or from the local palliative care team, if the primary healthcare professional is not experienced in palliative care.
- Planning ahead in the earlier stages of dementia
- While the person still has mental capacity, ensure that they and their carers have discussed how they should plan ahead. Advise the person to consider making, before they lose capacity:
- Advance statements of wishes and feelings they would like to be taken into account in future decisions about their care and affairs.
- Advance decisions in which they state what treatments they do not want to have and would not consent to.
- Lasting power of attorney in which they state who they want to make decisions for them if they cannot make decisions for themselves.
- Preferred place of care plan in which they record their decisions about future care choices, for example where they would like to die.
- A will.
- Optimizing palliative care in the later stages of dementia
- In the last 6 months of life, people with dementia are thought to experience symptoms (including pain) that last for longer and are less likely to be treated, compared with people dying of other conditions. It is therefore important to ensure that palliative care needs are met in accordance with the Department of Health's End of life strategy, which includes use of appropriate tools and pathways (including Preferred priorities for care, Gold standards framework, and the Liverpool care pathway).
- Assess the person's needs, make them feel comfortable, and enable them to die with dignity and in a place of their choosing.
- Any decisions about care and treatment (including resuscitation) should take account of the person's wishes and any advance decisions they have made.
- Assess the carer's needs and support them during their bereavement.
- Coordinating care services
- People with dementia may require coordination of a diverse range of services to enable them to continue living at home and to die there if that is their wish. These services include primary care, community nursing, domiciliary care, social care, community pharmacy, occupational therapy, physiotherapy, dietetics, out-of-hours services, and hospice.
- Taking values into account
- People involved in decisions about the care and treatment of people with dementia can have different values. When negotiating decisions, follow the principles of values-based medicine, which include:
- All decisions depend on values as well as facts.
- Shared values can be ignored, but diversity of values may be increasingly common.
- Diversity of values may remain unnoticed if they are presumed to be shared. Values therefore need to be specifically elicited.
- Conflicts of values are resolved primarily, not by reference to a rule prescribing a 'right' outcome, but by processes that support a balance of the different perspectives, each of which may be legitimate.
Additional information
- The Liverpool care pathway for the dying patient provides a national framework for caring for people in the terminal phase of a disease. It aims to improve professional communication and documentation and to integrate national guidelines into clinical practice (see www.liv.ac.uk).
- The Gold standards framework provides multiple tools, tasks, and resources, which can be adapted within GP practices and community nursing teams, to improve end-of-life care for people with any end-stage illness.
- Preferred priorities for care is a patient-held document designed to help people make choices in relation to end-of-life issues.
Basis for recommendation
These recommendations are from the Dementia guideline published by the National Institute for Health and Clinical Excellence (NICE) [National Collaborating Centre for Mental Health, 2007], and are in line with NICE guidelines on palliative care in cancer [NICE, 2004].
- There is little good evidence on how best to provide palliative care for people with dementia. Questions such as when support from the NHS is most needed, what form it should take, and how care home staff and NHS professionals working in primary care can work more effectively together are being addressed in a UK research project, EVIDEM–EOL.
- NICE recommends following the principles of values-based medicine; these are summarized by [Petrova et al, 2006] and in the GP curriculum statement [RCGP, 2007d].
How should I manage the common palliative care problems in people with dementia?
- Eating and drinking
- Encourage the person to eat and drink by mouth for as long as possible.
- Refer for specialist assessment or seek advice if feeding or swallowing is a concern. Specialist dietary advice may be helpful.
- Feeding by tube is not usually recommended, but it may be considered if dysphagia is thought to be transient.
- Distress or changes in behaviour
- Assess the person for an underlying cause (which is often pain), and manage as appropriate.
- Pain
- Simple measures such as a heat pad, massage, and relaxation should be considered before drug treatments.
- The CKS topic on Palliative cancer care - pain has detailed information on assessing pain and managing the different types and sources of pain (such as muscle spasm; neuropathic, bone, and intracranial pain; and colic).
- Fever
- Assess the person for an underlying cause.
- Prescribe an antipyretic (such as paracetamol) and use mechanical means of cooling the person (for example cool compresses). This may be all that is required.
- Constipation, nausea, and loss of appetite
- Insomnia
- Insomnia can be managed with short-courses of sedatives and hypnotics. Elderly people with dementia may be more susceptible to their averse effects. For more details and prescribing information, see the CKS topic on Insomnia.
- Anxiety and Depression
- Withdrawing treatment
- Resuscitation — planning ahead
- Consult the person's advance decision document to ascertain their wishes regarding resuscitation.
- If the person has not documented an advance decision to refuse resuscitation, decisions about resuscitation should:
- Take account of any expressed wishes or beliefs of the person with dementia, the views of the carers, and the multidisciplinary team.
- Be made in accordance with the Resuscitation Council guidance and the person's mental capacity.
- Record decisions about resuscitation in the medical notes and care plans.
- Advice should be sought, either from a GP with a special interest or from the local palliative care team, if the healthcare professional is not experienced in palliative care.
- The CKS topic on Palliative cancer care - general issues is largely applicable to palliative care in dementia, and includes information on assessing and managing physical, psychological, social, and religious needs, as well as assessing the needs of carers and family.
Basis for recommendation
These recommendations are in line with guidelines from the National Institute for Health and Clinical Excellence (NICE) [NICE, 2004; National Collaborating Centre for Mental Health, 2007] and policies published by the Department of Health [DH, 2008a; End of Life Care Programme, 2008].
- The recommendations are supported by a survey of carers which found that the most common symptoms in the last year of life in people with dementia were confusion (83%), urinary incontinence (72%), pain (64%), low mood (61%), constipation (59%), and loss of appetite (57%) [McCarthy et al, 1997].
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