1. Advance Care Planning in dementia Dr Karen Harrison Dening Head of Research & Evaluation Dementia UK GSF 2016

2. What will you take away? Explore what we mean by advance care planning
Context to advance care planning in dementia
Understand how advance care planning might support better palliative and end of life care for people with dementia

3. End of life care in dementia – why is it important?
Dementia is a progressive and irreversible neurodegenerative disease - life-limiting
1 – 2 - 3
Approximately 670,000 people in the UK are living with dementia – and increasing (CFAS)
It is estimated that 1 in 3 people aged 65 years and over will die either with or from dementia
Research evidence (and media coverage) suggests that people with dementia may not receive the care they need at the end of life

4. Advance Care Planning
Advance care planning involves discussion of future care preferences to develop an understanding of an individual‘s wishes in the event that they are unable to make decisions for themselves
NICE Dementia QS5: People with dementia, while they have capacity, have the opportunity to discuss and make decisions, together with their carer, about the use of advance decisions to refuse treatment, advance statements, Lasting Power of Attorney, Preferred Place of Care

5. Is it an issue?
What are the barriers to involving people with dementia in identifying their wishes and preferences for future care (ACP)?

6. Why is it important to identify wishes and preferences for end of life?
Time for the person with dementia and their family to prepare - practical, psychological, cultural and spiritual considerations
Allows shift in goals of care
Ensure anticipatory/advance care plans in place
A significant proportion of people with dementia may die before reaching advanced disease
Understanding prognosis

7. Assessing prognosis is complex and difficult
Accurate prognostication in older people with non-malignant disease may not be realistic
No risk prediction tool has been developed of sufficient accuracy, reliability or validity for use in clinical practice
They may have been frail for so long or declined so slowly – often with previous “false alarms” – that it is hard to recognise or believe
Waiting for an additional event – unpredictable or “random” time frame

8. How might we need to think differently about dementia?
Usually we may wait until advanced stages of disease to discuss end of life care preferences
We may not consider palliative care until “active” treatments are no longer beneficial
In dementia loss of mental capacity occurs early in disease so can’t have those conversations later
It may be necessary to combine palliative, supportive and active care throughout the disease course to appropriately manage needs
Can family carers support ACP and future decision making?

9. Is it an issue?
Do family carers help you/us in developing ACPs for people with dementia?

10. Treatment choices in 3 health scenarios A PhD study
Here and Now
People with dementia, largely, wanted treatments
Carers were generally, good at predicting treatment preferences
Severe Stroke and Coma
Only half of people with dementia preferred treatment
Carers tended to over predict the preference for intervention
Advanced cancer, 6 months to live
Only one third of people with dementia wanted treatment

11. However....
In future scenarios, at best, carers’ ability to accurately predict the
treatment preferences of a person with dementia were moderate to low – no better than by chance.
The more psychologically distressed a carer was the less able they were able to predict treatment preferences of the person with dementia in future scenarios and where the treatment was more aggressive, i.e. CPR and tube feeding.
High levels of uncertainty.

12. Personal context to decision making
How have you made decisions about healthcare and/or treatment wishes in the past?
What changes to this decision making process (if any) do you see the diagnosis of dementia has made?
What healthcare and/or treatment decisions may you need to make in the future now that there is a diagnosis of dementia made (for you/your family member)?

13. Decisions relating to healthcare – emergent themes
Historic
Untested decision making
Belief in the principle of shared decision making
Gender specific decision making
Autonomy
Effect of a diagnosis of dementia
Getting the diagnosis
Transitions to decision making
Stepping down
Compromises and costs
Future decision making
Future care
Planning ahead for end of life
Trust in others

14. Is it an issue?
How can we better support families to think and plan ahead?

15. Conclusions Window of opportunity Hot potato
Do we expect too much of family carers?
Supporting people with dementia and their family carers in advance care planning
Important information for acute hospital care

16. Thank you for listening