Research for carers of people with dementia
It is estimated that 670,000∗ people are acting as ‘informal carers’ of someone with dementia. These carers look after a family member or friend who needs help due to age, illness or disability and are not usually paid.
Looking after a loved one with dementia can have a huge impact (positive and negative) on a carer – emotional, social, and practical. Carers may experience changes in their relationship with the loved one, try to balance new and existing priorities, have to make difficult decisions and feel a range of emotions. It therefore makes sense that current dementia research doesn’t just focus on people with a dementia diagnosis but their loved ones too.
There are many studies on Join Dementia Research looking at ways to improve the quality of life for people caring for those living with dementia.
Cate Latto talks about her experience taking part in research as someone whose mother had dementia
Some of this research aims to better understand how a dementia diagnosis can impact a carer, for example the relationship between family members (DECIDE, Influence of relative expressed emotion, Relational Change and Grief in Dementia), or the feelings of obligation and impact of this feeling on the carers own mental health (Caregiving Hope). These studies hope to enable researchers to develop interventions to help carers, or to better equip healthcare professionals to advise and support people with a dementia diagnosis and their loved ones. Many of these studies involve questionnaires or interviews with study participants.
Other studies may look at trialling the effectiveness of new online resources, designed for carers, such as The Rhapsody Project and the CADRE study. The Caring for Me and You study is looking at novel online support packages to help carers access therapy and support in order to cope with feelings that can arise as a result of their caring role, such as stress, anxiety and depression.
There are studies looking at particular aspects of the role of the carers, such as how carers access and organise health and other care and services for someone with dementia (The Carer Experiences Study). ‘The use of home adaptation by people with dementia’ is looking at how people access information about adapting their home and what their feelings are regarding making changes to where they live.
Other studies that are looking for people with dementia may request that participants have a study partner. This is often a carer. Having a study partner enables researchers to receive feedback on changes in the loved one’s behaviour, mood or activity that the person may not report themselves.
Take part in research
Remember, you can chose to take part in any study that you match to on a case by case basis. If some studies don’t suit your availability, or your situation changes, you can simply decline to take part.
Useful resources for carers
You can find lots of information about caring for a person with dementia on our charity partner websites:
You may also wish to take a look at the Admiral Nurses webpages.
∗ source: Alzheimer’s Society