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

fiona.kelly@stir.ac.uk

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

IntroductionLecturer 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 driversLiving 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

http://www.who.int/cancer/palliative/definition/en/

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 communityThe Natural Death Handbook. http://www.globalideasbank.org/natdeath/ndh5.html

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

http://www.scotland.gov.uk/Resource/Doc/239823/0066155.pdf [Accessed 2nd February 2010]

The Natural Death Handbook

http://www.globalideasbank.org/natdeath/ndh5.html [Accessed 2nd February 2010]

World Health Organisation (2004) WHO Definition of Palliative Care

http://www.who.int/cancer/palliative/definition/en/ [Accessed 2nd February 2010]

Photographs: Tony Marsh

Title picture: John Kelly

Iris Murdoch Building, University of Stirling, FK9 4LATel. 01786 467740Email: dementia@stir.ac.ukWeb: www.dementia.stir.ac.uk

Thank you!

Any questions?