According to The Alzeimers Society there are 50,000 dementia caregivers in Ireland
Pat is about to finish his shift at work. He wants to get home in good time before the home help finishes. Pat will prepare dinner for himself and his wife Eileen, and help her to eat. They will try to watch television for a while, but she finds it difficult to concentrate on anything for long. Eileen has been diagnosed with frontotemporal dementia-she has worsening memory, making it difficult to do many of the things she previously took for granted. Even allowing for her memory problems, her social behaviour is also becoming very inappropriate at times. Pat hopes to retire in the next few years but worries about whether they’ll have enough money for the future.
Throughout Ireland, there are many people with stories like “Pat”, people caring for family or friends who are living with dementia. This can range from supervision with relatively complex tasks like managing finances to around-the-clock assistance with basic activities like eating or dressing. People with dementia have changes in behaviour; they may wander and get lost, wake frequently during the night, or even become aggressive, adding to difficulties that carers can experience.
The Alzheimer’s Society of Ireland, who help dementia carers find what supports are available to them, report that there are 50,000 family dementia caregivers in Ireland. In the USA, the Alzheimer’s Association has indicated that in 2014, friends and family of people with dementia provided approximately 17.9 billion hours of unpaid care, with an estimated economic value of $217.7 billion (see http://www.alz.org/facts/).
A recent paper from researchers at Trinity College Dublin has indicated that some people caring for family members with dementia may be at risk themselves of worsened cognition, particularly in male carers or carers with low income. Interestingly, caring for a spouse with dementia seemed to reduce the impact of depression upon people’s ability to carry out daily tasks efficiently. Nonetheless, it is important that carers seek help when they feel that they are themselves at risk of depression.
A number of studies have shown that the demands of caring for a loved one with dementia can affect people physically. For example, there is evidence that the more challenging the behaviour of the patient, the higher their carer’s blood pressure will be. The immune system is also sensitive to the effects of long-term stress. Studies have indicated that changes in immune cells in response to a challenge can be impaired. It has been shown that if a carer suffers a wound, this can take longer to heal.
However, the impact of stress on the body depends upon our response to what life throws at us. Carers with a sense of confidence about their ability to care for a loved one are less impacted by their caregiver role. Carers with positive coping strategies (such as focusing on specific solutions to problems) are less likely to suffer negative effects from caring. Caregiving can be a highly rewarding experience; many report that caring for someone with dementia has made them develop a greater sense of meaning in their life. Nonetheless, carers, doctors, friends and family need to be vigilant for signs of caregiving taking too heavy a toll on those who care.
We are currently conducting research on dementia caregiving in collaboration with the Centre for Gerontology and Department of Epidemiology & Public Health at UCC. We are looking at the effects of dementia caregiving on the well-being, biology and cognition of caregivers. We are also interested in the effects of classes for caregivers to help them deal better with caregiving. This research is funded by the Health Research Board, Ireland. If interested in taking part you can contact Andrew P. Allen (Department of Psychiatry & Neurobehavioural Science and APC Microbiome Institute, UCC) at 0899526518, or at givingcare2020@gmail.com.
