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

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

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

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

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

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

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

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?

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

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

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.

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)?

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

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

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

Thank you for listening Karen.harrison-dening@dementiauk.org