End of life care for people with dementia dying at home Dr Fiona Kelly

Aims of presentation Understanding of dementia Discussion of end of life and palliative care in relation to dementia Some difficulties specific to dementia Dying at home – challenges and benefits The way forward

Introduction Lecturer in dementia studies at the Dementia Services Development Centre. → → Practicing nurse in a care home for people with dementia – lots of experience of end of life care.

What is Dementia? Alzheimer’s Disease Vascular Disease Korsakoff’s Disease Lewy Body Disease Creutzfeldt-jacob Disease AIDS related Dementia Fronto-temporal Disease

Variable, progressive loss of cognitive function beginning with forgetfulness and difficulty concentrating and progressing to difficulties with reasoning, communicating, recognition and mobility. Dementia involves:

Some statistics One in six people over 80 and one in fourteen over 65 has a form of dementia. At present, in the UK there are estimated to be 820,00 people in UK with dementia and this is projected to increase to one million by 2025 (Knapp et al., 2007). The greatest severity of dementia is seen in the oldest old; this means that they will experience both physical and cognitive frailty. 36.5% of people with dementia live in care homes – this rises steadily as people age.

Trajectories of dying

Dying at home: policy drivers Living and Dying Well (Scottish Government, 2008) ACTION 9 NHS Boards and their partners should ensure equitable, consistent and sustainable access to 24 hour community nursing and home care services to support patients and carers at the end of life where the care plan indicates a wish to be cared for at home and this is compatible with diverse and changing patient and carer needs. ACTION 10 NHS Boards should ensure that rapid access is available to appropriate equipment required for the care of those wishing to die at home from any advanced progressive condition. Personalisation agenda (Alzheimer Scotland) Giving people with dementia and their families control of what services/support they want and when.

What is end of life care? Generally applied to those who are approaching death. When it is assumed that the person does not have long to live, the prognosis for a recovery is not good and there is little that can be done in terms of treatment. Key goal is to make the person comfortable and to attend to their needs and wishes as the end of their life approaches - a lot can still be done even when cure is no longer an option. End of life care and palliative care are integral aspects of care delivered to a person who is nearing the end of life.

What is palliative care? An approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual (WHO, 2004).

Palliative care: Provides relief from pain and other distressing symptoms Affirms life and regards dying as a normal process Intends neither to hasten nor postpone death Integrates the psychological and spiritual aspects of patient care Offers a support system to help patients live as actively as possible until death Offers a support system to help the family cope during the patient’s illness and in their own bereavement.

Palliative care: Uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated Will enhance quality of life, and may also positively influence the course of illness Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, and includes those investigations needed to better understand and manage distressing clinical complications. World Health Organisation (2004) WHO Definition of Palliative Care

Why palliative care for people with dementia? Policy (Living and Dying Well; Personalisation; National Dementia Strategy, England) Equity Dignity To improve the quality of care available to people with dementia throughout their journey and particularly as end of life approaches Fits with a person-centred approach.

A good death Facilitating a good death should be recognised as a core clinical proficiency. A good death involves: Facing death in which the person is aware and accepting of impending death Preparations for death in which the person considers the rituals he/she wants, completes his/her worldly affairs and makes plans for dying Environmental preparations in which the person considers different aspects of the environment in which death takes place, including the degree of technology involved and the extent to which death can be peaceful.

Difficulties with end of life care for people with dementia Difficulty anticipating death – long illness trajectory Difficulty with planning - cognitive deterioration Determining when is ‘end of life’? Traditionally, non-recognition of dementia as a terminal condition Social death – person already seen as socially dead Difficulty recognising care needs – particularly pain Communication difficulties – determining wishes, needs (spiritual, emotional, physical).

Dying at home Statistics – less than ¼ of people with cancer who want to die at home do so Insufficient statistics for people with dementia – but more likely to spend last year of life in a care home Concern about inappropriate admission to hospital

Why do so few die at home? Cultural preferences Family caregivers’ wishes Changing family structure Lack of available support for families Medicalised dying – is this seen as better? Dying seen as a complex process Fear of death?

Medicalisation of dying Medical processes assume primacy over the person –Intravenous, subcutaneous fluids –PEG feeding –Catheter –Hospitalization - noise, reduced privacy

Good reasons for dying at home Familiar environment – smells, sounds, pets, ‘familiar chaos’ Comfort items always available – pet, music, favourite pillow etc. Slower giving up of control Remaining part of the community The Natural Death Handbook.

Difficult practical issues Adjustments to layout of house Special equipment – who pays? Assessment and management of pain Fluids and nutrition – ethical decision- making Pressure relief 24hour care – shift working required

Assessment and management of pain Under-recognised and under-treated in people with dementia Observe for visual and non-verbal expression Know non-pain state Assume pain if deviates from normal presentation If presence of pain is uncertain, an analgesic may be administered to evaluate the presence of pain Monitor carefully Liverpool Care Pathway

artificial nutrition and hydration Arguments for the use of artificial nutrition and hydration include: Providing hydration and nutrition is a form of basic care that should not be denied to anyone Allowing someone to die from thirst or starvation is inhumane Arguments against the use of artificial nutrition and hydration include: This type of care is invasive and disproportionate Potential complications include infections, aspiration and fluid overload No proven benefit No proven discomfort in people who do not receive artificial feeding

Ethical decision-making Best interests Do good, prevent harm Consequences Duty of care Past/present wishes Keep person with dementia at the centre of decision-making

The way forward Listen to the wishes of people with dementia - advance care planning/advance directives Be pro-active – i.e. advance analgesic prescription Balance risk with benefit Home-based 24hr emergency respite care with consistent staffing Carer training and support – to reduce fear, support ethical decision- making, understand different cultural practices Access to specialist dementia palliative care services at home Flexible multi-disciplinary approach De-medicalise dying Allow time for care staff to grieve.

Key issue for care staff Anticipatory grief - loss of and grieving for the person before he/she has died. Risk of inadequate end of life care. But he/she is still a person, we need to recognise, respect and support the person right until the end of living.

References Knapp, M. et al., (2007) Dementia UK, London, Alzheimer’s Society Scottish Government (2008) Living and dying well: a national action plan for palliative and end of life care in Scotland, Edinburgh, The Scottish Government [Accessed 2 nd February 2010] The Natural Death Handbook [Accessed 2 nd February 2010] World Health Organisation (2004) WHO Definition of Palliative Care [Accessed 2 nd February 2010] Photographs: Tony Marsh Title picture: John Kelly

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