End of life care for people with dementia dying at homeDr 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
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: [email protected]: www.dementia.stir.ac.uk
Thank you!
Any questions?