Dementia is a condition that is unique to every individual who lives with it. And for those who do not have dementia, it can be challenging to understand what it is like living with dementia symptoms.

Alzheimer’s Society have created a new innovative piece of research, conducted by Ipsos MORI, that captures real picture of living with dementia today, from the people who know.

‘Turning Up the Volume: unheard voices of dementia’ project represents the large group of people, and through a series of in-depth interviews and surveys, dials up the voice of people who have the condition. By telling their stories, these people are presenting a picture of their day-to-day life from the care they receive to the stigma they may experience.

The research was carried out with in a number of way. One included a large scale survey, conducted between February and April of this year, of people who use Alzheimer’s Society services.

In the end, Alzheimer’s Society and their team of volunteers were able to collect 1071 surveys across England, Wales and Northern Ireland. Of these, only a total of 966 passed the rigorous criteria on consent.

Another element of the project included Ipsos MORI conducting qualitative research, which entailed 32 in-depth interviews. The interviews were between 60–90 minutes, in order to collect authentic and detailed insights.

To cover a wide range of people, the Alzheimer’s society included people of different ethnic and social groups, people under 65, people living in rural areas, as well as those who live alone.

So What Did They Learn?

When combining the survey with the in-depth interviews, the Alzheimer’s Society were able to see some themes in the responses they collected.

Many people expressed that there is a gap between what they need to live well and what their daily realities are. In particular, many people with dementia, and their carers, often find care not only hard to find but also quite expensive too.

The project found that 87% of people with dementia who were interviewed receive help from family in their day-to-day life. but only 14% receive help from a paid carer.

Another interesting highlight from the project was the public’s misconceptions of Alzheimer’s disease, and the misconceptions of those who have the condition. Both are things that many of the participants actually found challenging to live with.

Because of the symptoms, perception around their abilities and the stigma around Alzheimer’s, many people feel as though they have lost their identity, their sense of worth is negatively affected, and there is an increased feeling of isolation.

The project not only looked at people with Alzheimer’s, but also the people who care for them. Many carers felt stressed and restless that they must be on-hand around the clock – which was one of their greatest challenges.

Approximately one third of carers said that caring for someone had impacted upon their personal relationships and social life because they struggled and worried about leaving the person with dementia.

Three in five carers said that their health had been negatively impacted by caring for someone with dementia.

However, some people with dementia who were surveyed have said that if well supported, they can live well, continue to do the things they enjoy and remain connected to their community.

According to one anonymous participant, ‘with a little bit of support, stimulation and encouragement most people with dementia can do it.’

To read more about the project, go to ‘Turning Up the Volume: unheard voices of dementia’

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