What’s the evidence behind the Dementia ‘I’ statements?

 Dr Linda Birt,Senior Research Associate at the School of Health Sciences, University of East Anglia, discusses the Dementia ‘I’ statements and the PRIDE programme. (439 words)

I was diagnosed in a timely way
I know what I can do to help myself and who else can help me
Those around me are well supported and in good health
I get the treatment and support, which are best for my dementia, and my life
I feel included as part of society
I understand so I make good decisions and provide for future decision making
I am treated with dignity and respect
I am confident my end of life wishes will be respected. I can expect a good death
I know how to participate in research

(Abbreviated from outcomes derived from the work of the Dementia Action Alliance)

The ‘I’ statements in dementia are having an impact, being discussed by the Prime Minister and Professor Alistair Burns. These statements indicate what a good experience of living with dementia should look like.

The ‘I’ statements may be seen as utopian idealism, particular in these ardent times of cuts and reducing services, yet there is evidence people with dementia are taking steps to empower themselves to live well with the condition.

In preparation for developing a social intervention, academics from UEA and UCL looked at published research to understand the experiences of people living with early stage dementia. They found evidence that some ‘I’ statements are being achieved, with potential for others to become achievable.

Achieving the ‘I’ statements

Helping myself –helping others: The pathway through diagnosis to living well with dementia is different for each person. Interviews with people recently diagnosed suggest that some people adapt well to their diagnosis whereas others find that the diagnosis challenges their self-identity. Information from voluntary groups such as Alzheimer’s Society is often helpful but sometimes people did not know how to access this support. Some people help to raise awareness of the experience of living with dementia through active campaigning.

Being included in society: Friendships are important and may enable the person with dementia to experience being part of society in less restrictive ways than when they are with family. Keeping up hobbies and helping others can increase the person’s roles within family and society. While there is some evidence that many people positively adapt to a diagnosis of dementia, there is limited understanding about whether people living with dementia are empowered to continue to actively participate in the wider community. This is a theme we are exploring on the PRIDE study.

Making good decisions: ‘Subtle support’ from family and friends helps people with dementia remain involved in making decisions, increasing their confidence. Family carers may underestimate the wish of the person to be involved in making decisions.

Participating in research: Increasingly, there are examples of people with dementia not only being participants in research, but also taking the role of researchers, interviewing their peers.

There is potential to live well with dementia. Yet exclusion from social activities due to other health problems or frailty due to ageing can make living well with dementia more difficult. Family and friends, though trying to help, may reduce opportunities for the person with dementia to be involved in decisions. Concern about stigma can mean that people with dementia withdraw from social activities. Therefore it’s essential that good quality research continues to develop and evaluate psychosocial ways to support people with dementia to live well.

 Dr Linda Birt is Senior Research Associate, School of Health Sciences, at the University of East Anglia.

About the PRIDE programme

If this blog has sparked your interest in the PRIDE programme and you want more information, or to talk about taking part in the study, please get in touch with the researcher Linda Birt 01603 593298 linda.birt@uea.ac.uk