1. Kim Wrigley & Elaine Horgan
End of Life Care and Dementia

2. “You matter because you are you
“You matter because you are you. You matter to the last moment of your life and we will do all we can, not only to help you die peacefully, but to live until you die.”
Dame Cicely Saunders

3. What is Dementia ? Dementia is:
A syndrome characterised by the death of cells in crucial areas of
the brain
Known to affect memory, speech and language, comprehension,
motor skills, judgement and orientation.
A progressive condition from which a cure is not currently possible
An age related condition
Caused by more than 70 diseases of which Alzheimer's, Vascular
and Lewy Body are the most common.
Often insidious and gradual and has a median duration 6-8 years
May present initially as depression or anxiety
Eventually affects all ADL’s leaving the person totally dependant on
others

4. Dementia Subtypes
Alzheimer’s disease changes the chemistry and structure of the brain causing brain cells to die. It has a long slow progression.
Vascular dementia is caused by a series of small strokes or small vessel disease which affect the supply of oxygen to the brain. It can cause communication problems, stroke like symptoms and acute confusion.
Dementia with Lewy bodies is caused by tiny spherical protein deposits that develop inside the nerve cells of the brain. Hallucinations, parkinsonian tremor and fluctuating abilities are characteristic.

5. Who is affected by dementia?
Approximately 750,000 people in the UK currently. Of these
approximately 18,000 are under 65 years of age.
1 in 20 over 65
1 in 5 over 80
Alzheimer’s type dementia makes up 55% of all cases

6. Where do people with dementia live and die
New research suggests that over half (54%) of all people with dementia in the UK are resident in care homes with most people dying in long term care or hospitals
Approximately 19% of people with dementia die at home
It is estimated that approximately 100,000 people with dementia die each year in the UK

7. Challenges in the last year of life
Physical and mental decline
Behavioural and psychological symptoms
Prognostic uncertainty
Ethical and Legal issues
Nutrition and hydration
Symptom Assessment / control
Diagnosing dying
Discontinuation and conversion of medication
Pathway drugs / administration (risk assessment)
Prolonged dying phase
Bereavement support
Resources
Education
Communication skills training
Engagement with other Services

8. The North West End of Life Care Model
Last Days of Life
First Days after Death
1 year
Advancing disease
Bereavement
6 months 1 2 3 5
The North West End of Life Care Model 4
Death
Increasing decline

9. Uncertainty in prognosis
It is very difficult to assess when a person stops living with dementia and starts dying from it
Developing methods of predicting the approach of death would enable better planning of care, particularly in moving from actively treating to the palliative care approach
Prognostic indicators guidance are recommended such as are seen in the Gold Standards Framework

10. GSF Prognostic indicators - Dementia
Unable to walk without assistance, and
Urinary and faecal incontinence, and
No consistently meaningful verbal communication, and
Unable to dress without assistance
Barthel score <3
Plus any one of the following:
10% weight loss in the previous six months without other causes, pyelonephritis or UTI,
Serum albumin 25 g/l, Severe pressure scores eg stage III / IV, Recurrent fever, Reduced oral intake, Weight loss, Aspiration pneumonia

11. Illness trajectories Dementia and decline Sudden death Cancer Organ
failure
Dementia
and
decline
Sudden death B C

12. Common Symptoms
Below are examples of the most common symptoms experienced by people who have dementia:
1, 65% experience pain
2, 60% experience confusion
3, 80% experience fatigue
4, 60% experience depression
5, 70% experience incontinence
Faull and Woof 2002

14. Non Pharmacological and Therapeutic Responses
Reality Orientation
Validation Therapy
Reminiscence therapy
Aromatherapy
Multi sensory stimulation
Music/Dance
Animal assisted therapy
Massage

15. Principles of good practice when working with the person with dementia
Individually tailored care plans
Life story work
Person centred work
Accurate and thorough assessment
Safe prescribing/administration of neuroleptic drugs (including discontinuation)
Skilled and knowledgeable workforce
Good quality training and education for all staff

16. Palliative care?
“Palliative care is an approach that improves the quality of life of the patient 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 2002)

17. Signs and behaviours that suggest a patient with dementia is dying (Regnard and Hockley 2003)
Deteriorating day by day or faster
Increasingly drowsy or comatose
Increasingly bed – bound
Peripherally cyanosed and cold
Taking increasingly little food, fluid or oral medication
Altered breathing pattern

18. Liverpool Care Pathway Management of care in the last days / hours of life
Aim to transfer hospice care more widely
Specialist Palliative Care teams lead the training
Once implemented-empowers generalists to care for the dying patient
Can be transferred to non cancer patients

19. Criteria for use of the LCP
All possible reversible causes for current condition have been considered:
The multiprofessional team has agreed that the patient is dying, and two of the following may apply:-
The patient is bedbound  Semi-comatose 
Only able to take sips of fluid  No longer able to take  tablets

20. Research
Patients with end stage dementia had a number of symptoms for which they did not receive effective palliative care-analgesia was infrequently used, dying phase not recognised and some people given antibiotics inappropriately in last days of life.
Lloyd-Williams and Payne, 2002

21. NICE Clinical Practice Guideline Dementia 2006
Health and social care professionals should incorporate a palliative care approach from the time of diagnosis until death for people with dementia
They should consider physical, psychological, social and spiritual needs to maximise the quality of life of the person with dementia and their family
Palliative care professionals, other health and social care professionals and commissioners should ensure that people with dementia who are dying have the same access to palliative care services as those with dementia
Primary care teams should ensure that the palliative care needs of people with dementia who are close to death are assessed and that the resulting information is communicated within the team and and with other health and social care staff

22. Key points
All professionals need to be aware of and be able to manage dementia as a significant co-morbidity in a range of conditions
Sharing knowledge, expertise and skills between different professional groups for patient benefit
The incidence and prevalence of dementia is increasing with the ageing population so we need to address this now
Unpaid carers still deliver much of the care for people with dementia
Palliative care models developed for people with cancer may well not be appropriate for those with dementia

23. Dementia is rising up the agenda
DOH National Strategy for dementia (2007)
Everybody's Business CSIP (2005)
Raising the standard Royal College of Psychiatry (2006)
NICE Dementia service Guideline (2006)
Improving Services and Support for People With Dementia National Audit Office (2007)

24. “And in the end, it’s not the years in your life that count
“And in the end, it’s not the years in your life that count. It’s the life in your years.”
Abraham Lincoln.

25. References www.goldstandardsframework.nhs.uk www.lcp-mariecurie.org.uk
Hughes.J.C, (2006) Palliative care in Severe Dementia, MA Healthcare Limited
NICE and SCIE. (2006) Dementia Supporting people with dementia and their carers in health and social care. London. National Collaborating Centre for Mental Health
Small, N; Froggatt,K and Downs, M. (2007) Living and Dying with Dementia Dialogues about Palliative care London Oxford University Press
Mental Capacity Act 2005
Alzheimer’s Society (2008) Home from Home. London

26. Thank You Mrs Kim Wrigley – End of Life Care Lead (Greater Manchester)
Miss Elaine Horgan – Enhanced Care Facilitator
Mrs Sue Mcainsh – Project Manager
Project Leads:
Chris Mullen – Workforce Project Director and Nurse Advisor. 
Hilary Compston – Associate Network Director Palliative Care (GMCCN)