One of the key objectives of the National Dementia Strategy is improving well-being, but carer burden and depression among isolated people living with dementia, is a major barrier.  More social  activities and improved carer support is greatly needed to deliver this important goal, argues Clarissa Giebel.

Dementia affects over 850,000 in the UK alone. But this number is not representative of the number of people truly affected by the condition. A diagnosis not only has an impact on the person receiving the diagnosis, but also on their family and friends.

What is dementia exactly? In short, dementia is caused by changes in the brain, you might have heard of amyloid beta and plaques building up in the brain, which slowly almost delete healthy brain cells, or neurons. At a certain point, this deterioration shows itself in different behaviours of a person. Poor memory and cognition, and forgetting people’s names or forgetting medication and appointments are some indicators. Other indicators are leaving the hob on or forgetting to change into new clothes every day. People also tend to experience behavioural problems, such as agitation, disturbed sleeping patterns, and changes in appetite.

There is no cure for dementia. Still, the media jumps onto research showing that drinking a cup of green tea a day and doing regular exercise could prevent dementia. These things have indeed been shown to be linked to reduced dementia, but there is no one treatment available.

So, with no treatment, the primary goal is to enhance the well-being of those with dementia, and the people around them, as much as possible. In a recent European study I have been involved in looking into transition from community living to institutional long-term care facilities, such as care homes, we looked into the well-being of family carers and what might causes increased levels of carer stress.

Across eight countries, including England, Sweden, Germany, the Netherlands, Spain, Estonia, France, and Finland, we showed that behavioural problems (such as wandering), supervision of daily activities (such as dressing), and absence of additional family carer support were linked to increased carer burden. Interestingly, we also found that being a female carer, and being an adult child carer, were linked to higher levels of burden.

The majority of dementia carers are female. But why do women tend to be more stressed by their caring duties than men? In our study, both male and female family carers cared similar amounts of time for their relative. So it couldn’t be a result of women caring more than men. However, men and women, in general, tend to have different coping mechanisms dealing with stress.

Also, as difficult as it must be to experience your partner’s dementia symptoms in front of you, adult children appeared significantly more stressed by the caring duties for their parents with dementia. This may be because adult children will have a busy lifestyle, juggling a job and possibly caring for their own children as well.

In certain situations, moving into a care home might be an agreeable, and beneficial, solution to all people involved. It is obviously nicer to stay in your own four walls for as long as possible. However, if caring becomes too overwhelming, it can help carers and people with dementia to reduce the stress on their relationship.

In the same European study, we also investigated how depressive symptoms vary from community living to living in a long-term care facility. Now, depression is a common comorbid disorder of dementia, which affects between 6 and 61 percent of people with dementia. Interestingly, we found that living in a care home was linked to reduced depressive symptoms. In cotnrast, people with dementia living in their own home showed higher levels of depressive symptoms.

There are some possible explanations for this. One would assume depression to be lower in the own home. But possibly it is the increased social interactions in care homes that alleviate symptoms of depression. Engaging in social activities, such as singing groups, has been shown to have a positive impact on the well-being of people with dementia. Another explanation could be that family carers rated their relative’s depressive symptoms when living in the community, and paid carers rated these when living in a care home. Paid carers have to look after several dozen residents, and thus little time to really get to know the person. Hence, they may not be able to spot symptoms of depression as easily as someone who has lived with the person for decades, or as adult-child carers.

Knowing some of the factors linked to increased carer burden and depressive symptoms in people with dementia, we can try and target these to support one of the objectives of the National Dementia Strategy: improving well-being. There needs to be more carer support to continue supporting the person with dementia living in their own home. There might also be a need for more social activities provided to people with dementia, and their carers, living in the community, to possibly reduce depressive symptoms. At the moment I am investigating the problems of people with dementia in engaging in social activities, amongst others, and how deficits in cognition and motivation can help explain these.

There might not be a cure yet, but there are ways to live well with dementia, and with more and more of us (and those we love) having to live with it, it’s urgent that we act.