A recent report, published by the U.S. Department of Health and Human Services, describes how caring for a person with dementia affects the caregiver, as well as the impact that supporting caregivers — through interventions like education and training — has on both caregivers and care recipients.
Read more about these supportive care approaches and the impact they have on dementia.
According to a study conducted by Schulz & Martire, over 50% of the care provided for people with dementia is done so by family members and friends. In fact, the Alzheimer’s Association reports that unpaid caregivers provide 21-60 hours of care per week.
When it comes to the impact that caregiving has on caregivers, there are many variables, according to a 2009 study conducted by Montgomery and Kosloski, including:
Although many aspects of caregiving are said to be positive, others can take an emotional and physical toll on caregivers. In fact, caring for a senior loved one with dementia has been found to be a heavier burden on caregivers than caring for people with other types of illnesses.
Dementia caregivers are found to have higher medical costs, visit health care providers more often and take more medicine than caregivers of those with other types of illnesses.
Of the multitude of interventions that have been studied to evaluate the impact on the needs of caregivers and people with dementia, 44 interventions were reported to have positive effects in randomized control trials according to the U.S. Department of Health and Human Services.
Some of the most impactful interventions included these supportive care approaches:
Assessment is an intervention that can be measured, which helps professionals discover the needs that can be addressed. Many caregivers have unmet needs for support such as:
The referral aspect pertains to providing caregivers with resources — such as Adult Day Centers and support group meetings.
Individual and/or family group counseling is incorporated into many programs that address the needs of dementia caregivers who experience mental health challenges or relationship strain. Other types of support that were found to be effective include peer support groups — via either face to face or online meetings.
Care coordination involves the collaboration of various health care or community service advisors, working together to provide supportive care for those with dementia and their caregivers. It usually consists of a person who acts as the leader of the team, called the Care Manager. Dementia care coordination programs have a goal of improving the quality of care for the person with dementia. They also provide help for caregivers in managing the complex maze of medical and social support that is available. Several dementia care coordination models exist, including:
Not only do caregivers need to understand the basic educational information about caregiving and dementia, but they also need to be taught skills in caregiving tasks and managing behavioral symptoms — commonly occurring in people with dementia. Another skill caregivers need to learn is how to address the ever-changing symptoms over the course of the disease. Education and training can be provided by health care providers, psychologists or social workers and it can also be provided via online videos, or as part of a multicomponent intervention program. The most effective educational programs were found to be those that provide an opportunity for activities such a discussion and role-play.
Respite care may be the single most effective supportive care intervention for caregivers. Respite care involves providing relief for caregivers either in the home or via facilities such as Adult Day Centers. Basically, respite care involves a family member or paid professional who takes over for a few hours or longer, to allow the caregiver some much needed time for self-care. Adult Day Centers provide services for people with dementia, such as meals and planned activities during the daytime hours. In-home respite care might be provided by a friend or a professional companion service. The goal of in-home care is to provide personal care with ADL’s (activities of daily living). Without respite care, caregivers may find it very challenging to find the time to implement other interventions, such as counseling, educational programs and more.
It’s important to note that regardless of what the medical studies show, not all caregivers can be expected to benefit equally from interventions.
As the number of caregivers increases, so too does the importance of understanding how to meet their needs for education, respite care, skills training and support — by connecting caregivers with the right resources.
Which supportive care approach for dementia would you find most helpful as a caregiver? We’d like to hear your thoughts in the comments below.