Great Expectations

A study examining the different preferences of people with dementia and their carers at the end of their lives.

by Essie Mac Eyeson

For the person with dementia their own experience of care can often differ from the experience of their carer. As their ability to make decisions deteriorates over time, it is increasingly important to ensure that the expectations of both the carer and the person with dementia are sufficiently aligned and incorporated into decisions on planning for future care or so called advance care planning. The nature of the decisions which the person with dementia and their carer should take together depend on whether issues surrounding the person’s mental capacity and their ability to make decisions about their own care have been sufficiently addressed.

Karen Harrison Dening, Louise Jones and Elizabeth Sampson have recently published a study, Preferences for end-of-life care: A nominal group study of people with dementia and their family carers, funded by the Marie Curie Palliative Care Research Unit UCL and Dementia UK.  The study looked into the differing end of life care preferences for people with early dementia and their carers. The results revealed that each group had different understandings and expectations of what constitutes a ‘good death’. Expectations were measured by identifying different individual preferences regarding care at the end of life, such as dying with respect and dignity, and then ranking them in order of priority. For the person with dementia, maintaining family links was the highest priority, whereas for the carer being in control was considered an expectation demanding the highest priority. The study’s conclusion suggests that the different expectations and preferences encountered by people with dementia and their carers may be directly related to their perceptions of their own present condition of care and the condition of their loved ones.

For the person with dementia, their expectations were focused around the present, perhaps due to the fact that they had difficulty imagining their future selves, and thus could not easily forecast their future experiences. The carers’ preferences on the other hand were embedded in their caring experience. This experience is often negative and dependent on both their relationship with the person with dementia and their perceptions of the care received by their loved one, which may account for why being in control ranked highest in priority for carers. Carers also felt that decisions regarding their loved one’s care may in fact be taken solely by healthcare professionals, despite advance care planning.

The disparities between the wishes of people with dementia and those of their carers add tension to the notion of providing the person with dementia with a ‘good death’, a death that reflects the individual’s own preferences for care at the end of their life.  Although the carer may believe that the decisions they take over their loved one’s care are based on what they believe the patient would want, they may often actually derive from their negative experience of caring for their loved one with dementia.

The study concludes that to ensure the wishes of people with dementia are met, clinicians should discuss with them as early as possible what they want to include in a plan for future care (advance care plan) to maximise the likelihood that their wishes will be adhered to as their capacity deteriorates further. Incorporating carer involvement into the process may have an added benefit of educating carers as to what their loved one’s preferences actually are, which would also enhance the implementation of advance care planning. Knowing what their loved one’s preferences are at the end of life may also provide the carer with better experiences of care as they witness the individual’s preferences, and not necessarily their own, being delivered.

Marie Curie Cancer Care is committed to ensuring that people can die in the place of their choice and that their preferences and care planning decisions are respected.  We continue to fund research which explores issues such as choice and care planning for those at the end of life.