Failure to plan for death means adults with dementia are unable to die at home

The Alzheimer’s Society has today published a report exploring why so many adults diagnosed with a form of dementia are unable, or unsuccessful, to end their days in the comfort of their own homes.

The report ‘My Life Until the End: Dying Well with Dementia’ concludes that dying at home is twice as unlikely for adults with dementia because of a ‘double stigma’ attached to their situation; the combination of a misunderstood mental condition combined with a tendency of health services to direct terminal care into hospitals and care facilities.

The charity wants there to be an open debate about the right to die at home and wants society to lose the unwillingness to discuss issues like death and mental health, in order to make way for more open and flexible end-of-life care plans.

Although feedback from the general public suggests that two-thirds of the public feel strongly they should be able to die in their own homes, only 21 per cent of us are currently allowed to do so. Findings also highlight a lack of discussion and planning as far as adults with dementia are concerned, which the charity believes also leads to a lack of dignity, with families and health services often showing they are unprepared for when individual’s lose the capacity to communicate.

Adding her voice to the research, Francine Collison from London, whose husband had dementia and passed away when he was 74, spoke of the benefits of advanced planning:

“My husband, Alan and I had already had conversations about the end of our lives before he was diagnosed with dementia. So when the end of his life was near I was able to make the decisions I knew he would want me to make with complete confidence and he was able to pass away the way he wished to.

“I believe it is imperative that where a conversation about end of life wishes hasn’t happened before someone is diagnosed with dementia, families find out what their loved one would like while they’re still able to express their views.”

chief executive Jeremy Hughes commented: “It’s hugely worrying that so many people with dementia are not ending their lives the way they wish or deserve to. Dementia is the third leading underlying cause of death in women and seventh in men; we cannot keep hiding from it. It requires careful planning.

“Staff working with people with dementia who might be nearing the end of their lives need to receive specific training so they can provide the best care possible, even when communication has diminished. People with the condition deserve to die with dignity, without pain, and in the place of their choosing as much as anyone else.”