They’re often referred to as the “invisible second patients” (1) and unsung heroes, but caregivers of family members with dementia are finally being noticed and recognized for the important role they play – often at the expense of their own health and quality of life.
Conservative estimates put the number of people with dementia at 36 million worldwide (2). Most live at home and are cared for by “informal” caregivers – usually a spouse or other family member. These individuals can devote several years caring for loved ones and coping with situations that are demanding, ever changing and stressful. As a result, caregivers often suffer from physical and emotional problems (3).
In many places there are now support services for caregivers – often group sessions or one-on-one meetings and training with care experts. Studies have shown that these help to improve the mood and quality of life for many caregivers and help prolong the time a person with dementia is able to receive care at home (4). That’s an important consideration given the high costs and limited availability of institutional care beds – and a further reason for finding helpful ways to support informal caregivers.
While “face-to-face” support programs can be beneficial, they may not be available in all communities or to everyone who needs them. Also, caregivers may be unable or unwilling to leave their loved ones alone to attend the sessions. For these reasons, telephone and internet-delivered support may be a cost effective alternative that more people will be able to benefit from – assuming it works.
We found two systematic reviews on the topic that aimed to find out (5 ; 6).
What the research tells us
A high quality systematic review found that in caregivers of people with dementia, internet support helped to improve some aspects of well-being such as self-confidence and self-efficacy (perception of one’s ability to manage a situation), as well as reduce stress, burden and depression. There didn’t appear to be any notable improvements to caregivers’ quality of life, coping skills or physical health, but since only a small number of studies reported on these outcomes, the review authors recommend further research (5).
Not surprisingly, the most helpful internet-based support programs were those that included more than just information, especially those that included personal connections, such as customized coaching and the chance to interact with other caregivers (5).
An additional and more recent high quality systematic review also found that interventions that combined both telephone and internet support were the most effective at reducing depression and increasing self-efficacy in caregivers of people with dementia (6).
So, while internet and telephone support programs don’t relieve the symptoms of dementia, the right programs may help relieve the feelings of isolation commonly experienced by caregivers.
The internet can help improve your health! Read more here.