Perceptions and experiences of children and young people with a parent with dementia

Lead Investigator: Professor Pat Sikes

Institution: University of Sheffield

Grant type: Project grant 

Duration: 2 years

Amount: £98,057

Scientific Title: The perceptions and experiences of children and young people with a parent with dementia

Why did we fund this project?

Comments from members of our Research Network:

'This topic certainly needs to be addressed through the development of evidence-based supports. The approach outlined here is sensitive and realistic.'

'It is difficult enough for a middle-aged carer dealing with the behaviour of aperson with dementia, so anything that can assist younger carers can only be beneficial.'

'This proposal addresses important issues for an almost unacknowledged group of people upon whom dementia is having a major impact.'

What do we already know?

In recent years, information campaigns and sympathetic media coverage have raised the UK public's awareness of dementia. It is not surprising though, given the age profile of, and the type of dementia experienced by those most commonly affected, the emphasis has been on describing and understanding Alzheimer's disease in the elderly. This reflects dementia services provision and focus. However, the numbers of thosediagnosed with early-onset dementia are rising. 

The assumption has tended to be that when someone has and is eventually diagnosed with dementia, the family members most affected will be elderly partners or middle-aged children and there is a growing body of research that has looked at these people's experiences and needs, particularly with regard to caring responsibilities. When the impact that having a family member with dementia can have on children, adolescents or young adults has been considered, it has usually been in their relationship as grandchildren. 

However there is a growing number of under 25s who have a parent with dementia both as a result of the rise in early onset diagnoses and also because of demographic changes including increasing postponement of childbearing and changes in familypatterns and structures with more people having second and subsequent families. 

This rise is significant as the limited evidence suggests that parental dementia in families where there are children and young people causes more damage than it does where the children are grown up. 

The aim of this study is to focus research on the perceptions and experiences of these children and young people with particular attention to any impact on their education and schooling. Inevitably, and increasingly these days, academic success has consequences for future life chances so anything that affects it assumes greater significance. This is, therefore, an area where an in-depth exploration could provide some useful evidence based insights that could inform the practice of those working, in various capacities and ways with affected families.

What does this project involve?

This study will collect the in-depth autobiographical accounts of up to 20 young people between the ages of 7 and 25 who have or have had a parent with dementia. 

This study aims to co-produce materials that young people themselves believe would be useful and supportive and that they think would speak well to the sorts of concerns they have experienced.

How will this benefit people with dementia?

Although there are some resources available for younger people affected by dementia, overall very little is available. This study aims to change that and ensure that there are resources available for the growing number of young people who have experience of a parent with dementia. Having resources co-created with people in or with past experiences of similar situations will ensure that the information is of value.