What Carers & People with Dementia Think About End-of-Life Care

Before entering into the later stages of dementia, which oftentimes bring with them a move to a long-term care home, it may be helpful to learn the thoughts of those who have already taken the journey. Hill & colleagues (2017) gathered the views of caregivers and care-receivers with dementia in respect to what they look for and believe is critical to good end-of-life care. Overall, they found that self-hood and autonomy, living in the here-and-now, practical approaches, and respecting familial ties were important values in care. That said, the researchers concluded that one particular type of program would not work for every case, because each individuals’ specific values (as well as the nature of the dementia diagnosis) are different. Poole & colleagues (2018) also examined caregiver and care-receiver views. From their interviews, the researchers found that those with dementia and their carers were in agreement that staying at home (or at least not moving around from facility to facility), emotional and physical comfort, and skilled care staff were vital for good end-of-life care, but the same individuals disagreed on the role that plans for the future and direct family involvement play in the care provided at the end-of-life. One take-away from this article was the helpfulness of planning ahead, since it made caregiver decisions less difficult to make during the later stages of dementia.

Access these articles: What is important at the end of life for people with dementia? The views of people with dementia and their carers and End-of-life care: A qualitative study comparing the views of people with dementia and family carers.