Those caring for people with dementia often feel they don’t have a support system that can help them cope with their burden, a British study reports.
The lack of support leads to stress, isolation and feelings of guilt, researchers said.
One thing that could help, the University of Lincoln team suggested, was including caregivers in evaluation of patients’ symptoms and behaviors. Not only would this give healthcare professionals better insight, but it could alleviate some of the negative emotions that caregivers feel about their task, the researchers said.
The study appeared in the journal Dementia. Its title is “Caregivers’ interactions with health care services – Mediator of stress or added strain? Experiences and perceptions of informal caregivers of people with dementia – A qualitative study.”
“The care being given by informal carers frequently goes beyond simply caring for a patient’s health and becomes a crisis management role which can exacerbate feelings of stress and burden,” Despina Laparidou, the lead study author, said in a press release.
“Our research has also shown that caregivers have an important role to play in the monitoring of patient behavior and behavioral triggers,” said Terence Karran, the study’s co-author. “It was felt that keeping a daily diary of symptoms and behavior could help to empower caregivers as well as improve communications with healthcare professionals.”
Many caregivers have no training on dementia or support networks to rely on. The study’s findings highlight the need for caregivers to have more knowledge, the team said.
Information on disease progression, coping with challenging behavior, and the financial and legal implications of dementia would help caregivers know what to expect, the researchers said.
Experts estimate that by 2050, more than 100 million people globally will have dementia in one form or another. This means the number of caregivers will increase.
Previous research has shown that many caregivers feel stressed out and depressed, and tend to neglect their own health. Feelings of entrapment and guilt, as well as lack of confidence in the care they can offer, are common as well.
Researchers noted that healthcare services and social services are often fragmented, making communication between medical professionals and care providers more difficult.
Many healthcare professionals have reported feeling that they have a theoretical knowledge of the disease but lack knowledge of how it is to live with dementia. This makes it difficult to provide the best support to caregivers, they have said.
“Our study has recognized a need for better information and education not only for carers but for healthcare professionals to create a better and more empathetic understanding of the physical and behavioral deterioration of the disease as well as surrounding issues like financial pressures and modifying the home environment to compensate for patients’ every-day difficulties,” said Niroshan Siriwardena, a University of Lincoln professor.
If the findings are acted on, they could lead to better dementia care and more information for caregivers, the researchers said.
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