Poor implementation of the Mental Capacity Act is leaving people with dementia and their families unaware of fundamental legal rights and feeling powerless to challenge decisions by professionals, research has found.
Against the ethos
Alzheimer’s Society surveyed 206 people living with dementia and 472 carers on their experience of the MCA. Almost one in five people with dementia felt that professionals routinely made decisions without asking them – a situation the study concluded was “against the whole ethos of the Act”. Just 12% of people with dementia felt professionals supported them to make their own decisions – a legal requirement under the Act – and more than a quarter (28%) felt they were rarely or never supported.
Feedback from an in-depth focus group carried out as part of the research raised concerns that people too often saw many different professionals who had “insufficient time” to get to know them and make effective best interests decisions.
The research was commissioned by the Department of Health and published in the Elder Law Journal.
Other key findings from the study included:
- The majority of people living with dementia (59%) said that they did not feel able to challenge professionals’ decisions as they did not know enough about the Act.
- More than half of people with dementia (52%) felt that every time a decision was made for them it was in their best interests.
- Two-thirds of carers who were acting as an attorney said that their decisions made on behalf of the person with dementia were respected by professionals all or most of the time.
The study concluded that implementation of the MCA remained “inadequate” and carers and people living with dementia were “unaware of their fundamental rights”.
“Their experiences show that even the key principles of the MCA are not followed in practice, and the various provisions providing rights are also not being implemented,” the research found.
The study also revealed some differences in the responses given by people who completed the survey online and those who completed paper versions. Only 15% of people with dementia completing the survey on paper had previously heard of the MCA compared to 35% of those who completed online. This showed that people with dementia must be able to access information in print form rather than there being an “over-reliance” on the internet, the study concluded.