The level of support needed by people caring for a loved one with dementia is underestimated, researchers have said.
The study, which was carried out by University College London (UCL) with funding from Alzheimer’s Society and support from Marie Curie, looked at levels of “pre-death grief” among those caring for a loved one with dementia.
Researchers said a variety of emotions – including sorrow, anger and acceptance – can be felt over the course of the disease, from diagnosis to death.
As part of the study, 150 family carers for people with dementia living at home or in care homes were interviewed.
It found the majority had a number of strategies for processing feelings of grief and could identify services they found helpful.
However, findings suggested 30% of those interviewed were in need of professional support, above the 10-12% recommended in the current public health framework model for bereavement care.
These carers provide vital care to people living with dementia, and they have a right to access appropriate support for their own wellbeing— Kirsten Moore, UCL
Concerns were also raised for current services, which researchers said “appear under-resourced to meet growing demand”.
Dr Richard Oakley, associate director of research at Alzheimer’s Society, said: “This study shows what we see every day on our Dementia Support Line – we desperately need an improved, better resourced grief and bereavement support system that not only supports carers at end of life but in the case of dementia, from diagnosis onwards.
“For a carer, strong feelings of grief can arrive well before a person living with dementia reaches the end of their life, as there is a loss of a shared future and intended relationship and lifestyle.
“These feelings may develop or change as the person’s dementia progresses and can start when they first notice they are unable to do the same things they used to, when they are diagnosed, or at any other point while they’re living with the condition.
“While family and social networks play an important role in providing support, this research shows that these networks alone are often not enough.”
Marie Curie called for ‘urgent change’ to ensure bereavement services are prepared.
Rachel Warren, senior policy and research manager at the charity and a researcher on the UK Commission on Bereavement, said: “Caring for a loved one with dementia can be a lonely and distressing experience. When someone mourns a loved one who is changing every day they can experience grief for the person who is still alive.
“Without appropriate support some carers are at risk of later experiencing prolonged grief disorder which can have a detrimental impact on their wellbeing.
“The number of people living with Alzheimer’s is increasing with the ageing population, so we urgently need to ensure better support is in place for carers.”
Kirsten Moore, the lead researcher on the UCL study, added: “We can see that the current bereavement models may underestimate the level of formal counselling and support these carers need and that services are under-resourced to meet the demand, meaning people are going without much-needed support.
“These carers provide vital care to people living with dementia, and they have a right to access appropriate support for their own wellbeing.”
