Addressing Well-Being of Caregivers of People with Major Neurocognitive Disorders
This article was researched and documented by Queenie Y, OTR/L.
An estimated 1 in 10 people age 65 and older has Alzheimer’s dementia. 83% of help provided to older adults in the United States come informally from family members, friends, or other unpaid caregivers, and about half of these caregivers provide help to an older adult with Alzheimer’s or another dementia, and about one in 3 caregivers is age 65 or older themselves (Alzheimer’s Association, 2016). Many caregivers delve into the role without training or much support, and often report reduced physical, emotional, and social well-being and even become burnout as they put the needs of others ahead of their own (Piersel et al., 2017).
Caregiver training and education is an essential part of our work in the home setting. It is important that to not only address our client’s needs, but also consider those of the caregivers. There are benefits to addressing the health and well-being of caregivers, especially for those taking care of a client with dementia and AD. There is evidence that suggests that it can also impact a client’s functional outcomes and ability to live at home. Research has found that patient functional decline, physical strain, and caregiver distress are strong predictors of placement into nursing homes later on (Piersel et al., 2017). In addition, a study showed that within a six-month time period, emergency department visits were higher amongst patients whose caregivers who scored lower in their health and well-being (as cited in Slaboda, Fail, Norman, & Meier, 2018). Therefore, it would be beneficial to utilize our skills to assess and address the well-being needs of the caregiver.
A systematic review by Piersel et al (2017) examined the effectiveness of interventions geared towards caregivers of people with Alzheimer’s Disease and related major neurocognitive disorders. While many studies included in the review were interventions specifically for caregivers in single or multi-component psycho-educational interventions, there are components that therapists can incorporate into our practice setting. In addition, a study translated a program named Skills2Care®, formerly known as Environmental Skill-building Program (ESP), into home-based practice. When the program’s sessions were integrated as part of the OT plan of care, there were successful reimbursement through the clients’ Medicare Part B. Addressing caregivers is within the scope of practice for occupational therapy.
Some treatment approaches and interventions that were recommended in the Piersel et al. 2017 systematic review included:
- Integration of education about dementia, behavioral management strategies, communication strategies, stress management for the caregivers, and coping skills
- Direct training and practicing with caregivers on AD for carryover rather than simply handing over educational materials
- Providing information about respite options
- Promoting interactions between caregiver and client with use of communication skills training and memory aids
- Implementation of cognitive reframing, mindfulness, techniques, stress reduction strategies, and physical activity.
In conclusion, by incorporating components into our plan of care to address caregiver well-being, facilitating caregiver skills training, including goals for caregiver education if we can, regularly assessing and asking about their health, or referring caregivers for therapy if applicable, we can further our impact on our clients and the quality of life for all involved in the clients’ care.
Alzheimer’s Association. (2019). Facts and Figures. Retrieved from https://www.alz.org/alzheimers-dementia/facts-figures.
Fenison, Benjamin C. (2011). What strategies have been most effective for preventing burnout for caregivers who provide direct long-term care to family members who suffer from Alzheimers? Pacific University Common Knowledge Mental Health CATs. Paper 22. Retrieved from http://commons.pacificu.edu/otmh/22.
Piersol, C. V., Canton, K., Connor, S. E., Giller, I., Lipman, S., & Sager, S. (2017). Effectiveness of interventions for caregivers of people with Alzheimer’s disease and related major neurocognitive disorders: A systematic review. American Journal of Occupational Therapy, 71(5), 7105180020. https://doi.org/10.5014/ajot.2017.027581
Slaboda, J., Fail, R., Norman, G., & Meier, D. E. (2018, January 11). A study of family caregiver burden and the imperative of practice change to address family caregivers’ unmet needs. [Blog post], doi: 10.1377/hblog20180105.914873
Thompson, C. (2017, November 10). How OTs can support caregivers. [Blog post]. Retrieved from https://www.rehabalternatives.com/2017/11/10/how-ots-can-support-caregivers/#_edn3