There May Not Be Enough Grief Support for Dementia Caregivers, Study Finds

As a dementia patient’s disease progresses, it’s common for their caregivers to experience grief. This comes as the person they know is gradually lost. When loved ones experience difficult emotions like this, they may often need to turn to professional support. However, a new study finds there may not be enough available.

Researchers at University College London recently investigated pre-death grief in caregivers for dementia patients, finding that a larger portion of them need professional support than what is currently thought. According to the study, published in the International Journal of Geriatric Psychiatry, current public health framework in the United Kingdom assumes that most people will be able to manage with the support of their social circles, while 10-12% will need to reach out to professionals. However, in interviews with 150 caregivers, the team found that figure was actually around 30%.

Distressed older man with hand on head

Kirsten Moore, lead researcher who was based at the Marie Curie Palliative Care Research Department, UCL Psychiatry, while completing the study, says, “Our research showed that 78% of those caring for someone with dementia reported experiencing pre-death grief. The participants cited that finding the right person to talk to wasn’t always easy and that some feel they can’t access bereavement services as the person is still alive.

“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.”

Marie Curie, an end of life charity that supported the research, says the findings show there need to be sufficient bereavement services now, but that need will grow as the population continues to age. The organization also says if caregivers don’t get the support they need, they’re at risk of prolonged grief disorder, and it’s essential for someone experiencing grief before and after a loved one’s death to be well supported in order to cope.

Distressed senior woman being consoled by female doctor

Dr. Richard Oakley, Associate Director of Research at Alzheimer’s Society, which funded the research, says, “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.”

The Alzheimer’s Association notes that pre-death grief for loved ones of dementia patients does not differ much from the standard grief process. There may be denial, anger, guilt, sadness, and then acceptance, all in different orders. The organization says among the things you can do to process these feelings are talking with a trusted friend, finding a therapist that specializes in grief counseling and with whom you feel comfortable sharing, or joining a support group of other caregivers.

For more information on grief and dementia, click here.

Distressed senior man speaking about his feelings with woman
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