A critical examination exploring when is the best time for professionals to capture the wishes and values of patients who have been diagnosed with dementia and their end of life care

Introduction:
Dementia is the focus of many studies and is a current focus for healthcare due to the ever changing demographic of the UK and in developing countries in terms of healthcare provision. Statistics worldwide are seeing an increase in those people who live beyond 60 years of age (World health organisation 2012, Alzheimer’s Society 2013). A startling statistic which emphasises changing elderly demographic in the UK is the increase in centenarians since the 1960s from 300 to 6,000 in 2004 and a projected increase to over 6,000 in 2036 ERSC (2007). Recent figures from the Office of National Statistics (2017) indicate that the trend towards an older population is increasing and spreading to more urban areas.
Figures in 2009 state that 36 million people worldwide are living with dementia and this is projected to reach 115 million by 2050 (Poppe et al 2013). However there is still an indication that many people remain undiagnosed. In Wales figures indicate that by 2021 55,00 people will have dementia. This fact coupled with a faster growing ageing population highlights a challenge for health care provision.
When people suffering from or living with dementia are admitted to hospital their ability to make decisions regarding their care and treatment can be affected and in these cases a legal framework needs to be in place (Brown et al., 2009). This framework is currently managed using the Deprivation of Liberty Safeguards 2007 (DoLS). These safeguards were introduced into statute via the Mental Health Act 2007 (Department of Health 2007) but they are a direct result of other legislation – the Mental Capacity Act 2005 (MCA) (Department of Health 2005).
The author co-ordinates DoLS on behalf of the UHB and is responsible for ensuring that the principles of the MCA underpin all care and treatment decisions.
Aim: The aim of the dissertation was to consider the current literature in relation to when professionals should capture the wishes and feelings of patients living with dementia and specifically those wishes and feelings regarding end of life care.
Methodology: A literature review was undertaken using as its base the terms dementia, capacity, end of life care/advance care planning and wishes and feelings. The initial inclusion criteria for the literature comprised of literature accessed between 2006 – 2017 which was English speaking. The Mental Capacity Act became statute in 2005 and this was another reason for choosing research around this time. Older research literature was deemed unsuitable as the literature would not include the principles of the fundamental tenet of capacity as it now applies to healthcare, and formed a component of the exclusion criteria. It included literature aimed at people with a diagnosis of dementia aged over 65 years.

Results: Four themes were identified - capacity, timeliness, those best placed to have the difficult conversations around end of life care and advance care planning. They raised issues of personhood and values regarding decision-making, the struggles for carers and for professionals who are not equipped personally or professionally to have these conversations. The literature recognises the importance of end-of-life care planning and the links with palliative care are significant yet there is no uniform policy or guidance on this issue locally.
Conclusion: Mental capacity is central to all care for patients who are living with or dying with dementia. Poor cognition will impair decision-making and this will predictably get worse as the dementia advances. Without mental capacity most decisions have to be made for people as opposed to with them and decisions at end-of-life tend to be made by the professionals caring for them unless they have made legal provision in terms of a Lasting Power of Attorney or Deputyship. With regard to end of life care and advanced care planning most evidence suggests that timing is crucial if the person with dementia wants to be or has to be involved in this as there is no dispute regarding the terminal nature of the disease just an impossible predictability about its time projection. Therefore, the lack of capacity is clearly a barrier to communication with regards advance care planning.