Being central to decision making means I am still here!: The essence of decision making for people with dementia

The ability to make choices and decisions, and to have those decisions upheld, is central to self-determination. For people living with a diagnosis of dementia, however, it can be difficult to remain involved in decision making. While many studies show that people with mild or moderate dementia have the ability to participate in decision making, there are also indications that the attitudes of those around them, including health professionals and family carers, can sometimes be a barrier, and there is generally little understanding about the nature of decision making for this population. This small pilot study draws on van Manen's approach to phenomenology to explore the essence of decision making for people living with dementia. The findings highlight the importance of remaining central to decision making, and the key role that subtle support from carers plays in enabling this.

► The essence of decision making for people with dementia is explored.
► Participants wanted to remain central to decision making for as long as possible.
► Subtle support from carers was a key factor in maintaining a sense of control.