Caregivers, Dementia and the Net

Dementia is a growing problem and the numbers are increasing. Conservative estimates put the number of people with dementia at 36 million worldwide. The majority of people suffering from dementia live at home and are cared for by their spouse or another family member. The stress and challenges of caring for a loved one with dementia often result in physical and emotional problems for the caregiver, which is one of the topics that COSCO Health and Wellness Institute delivers in our workshops. 

However, Internet-based support that offers information, personalized coaching and connections with other caregivers can improve depression, self-confidence and well-being for caregivers is a relatively new idea to help caregivers. Combined telephone and internet support seems to be especially effective for improving caregivers’ self-worth and depression.  

Caregivers are the invisible second victims of dementia, and it is important that institutions, society, and the government finally notice and recognize them for the important role they play – often at the expense of their own health and quality of life. These caregivers 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

The cost of treating dementia is growing and the government has realized that support services for caregivers, often group sessions or one-on-one meetings and training with care experts, is important to help control costs. The reality is that intuitional care is costly and there is limited availability of institutional care beds. Studies have shown that the group sessions 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.

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.

A high-quality systematic review by Eoots L, de Vugt M, van Knippenberg called A systematic review of Internet-based supportive interventions for caregivers of patients with dementia. 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.

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.

An additional and more recent high quality systematic review by  Jackson D, Roberts G, Wu ML, et al. A systematic review of the effect of telephone, internet or combined support for carers of people living with Alzheimer’s, vascular or mixed dementia in the community. 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.

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 and should be supported and used.