Understanding Dementia/Alzheimer's Caregiving by Family Members

Dementia or Alzheimer’s caregiving is a multifaceted role that extends beyond physical care tasks. It also includes assisting the family members with cognitive impairments like memory loss and confusion, managing their medications, and coordinating medical appointments. This practical aspect of caregiving is often physically and mentally demanding.

Balancing these caregiving duties with other life responsibilities such as full-time employment can be challenging, with 53% of reported caregivers adjusting their work hours, taking time off, or reducing their work commitments (The American Association of Retired Persons & National Alliance of Caregiving, 2020). This can result in missed career opportunities and financial setbacks, and caregiving expenses, including medical care, medications, and home modifications, can strain finances. Caregivers may also need to invest in respite care or professional help.

The demands of caregiving can limit social interactions as the carer has less time for these activities. Friends without these caregiver responsibilities may not understand the extra work taken on and continue to expect the same level and frequency of attention—something that is simply no longer attainable (Gallagher-Thompson, 2023).

Caregiving presents a complex web of challenges and can also take a mental toll on the family members involved.

The Mental Health Toll on Dementia or Alzheimer's Caregivers

This type of caregiving places an immense emotional and psychological burden on family members who take on this role, an aspect that mental health professionals need to recognize. Emotionally, caregivers witness the gradual decline in their loved one’s cognitive abilities, leading to feelings of grief, frustration, and loss (Zarit & Heid, 2015). They also contend with changes in their loved ones’ behavior, such as mood swings and agitation, due to dementia-related cognitive changes. These emotional challenges can significantly impact caregivers’ mental health.

The relentless and unpredictable nature of dementia, coupled with the need to balance caregiving with personal and professional obligations, often results in chronic stress, sleep disturbances, and physical health issues (Thompson, 2023). This persistent stress can exacerbate pre-existing mental health conditions, amplifying the overall mental health burden.

And as mentioned above, caregivers often face social isolation as they devote substantial time and energy to their loved ones, leading to loneliness and anxiety or depression. Understanding these complex aspects of dementia and Alzheimer’s caregiving is essential for mental health practitioners to provide effective support.

Supporting Caregivers' Mental Health

Hogrefe authors can help: When clinicians meet caregivers outside of the caregiving context, having a general understanding of Alzheimer’s disease and dementia and what challenges family members face can be very helpful (Alzheimer’s Disease and Dementia; Mast & Yochim, 2018). They also need to know the best assessment tools to assess the mental health of family caregivers (Family Caregiver Distress; Gallagher-Thompson, 2023), which will help them identify what Pachana et al. (2021) call the “hidden patients.”

Supporting family caregivers so they can maintain good mental health in the context of dementia caregiving is a critical aspect of ensuring their ability to deliver quality care as well as to remain healthy. As mentioned in the Gallagher-Thompson book, mental health practitioners play a pivotal role in offering guidance and interventions tailored to the unique challenges faced by caregivers. It discusses how mental health support can make a profound difference in caregivers' lives by offering a combination of education, coping strategies, emotional support, and practical guidance. Interventions incorporating cognitive behavior therapy and acceptance commitment therapy have proven to be effective, helping to improve psychological and physical health as well as quality of life in family caregivers (Psychotherapeutic Support for Family Caregivers of People with Dementia; Wilz, 2024).

Ultimately, the role of mental health professionals in supporting caregivers is integral to creating a more compassionate and resilient caregiving ecosystem.

References:

The American Association of Retired Persons & National Alliance for Caregiving. (2020, May 14). Caregiving in the United States 2020. The American Association of Retired Persons. doi.org/10.26419/ppi.00103.001

Alzheimer’s Association (2023). 2023 Alzheimer’s disease facts and figures. Alzheimer’s and Dementia, 19(4), 1598–1695. doi.org/10.1002/alz.13016

Gallagher-Thompson, D., Bilbrey, A. C., Qualls, S. H., Ghatak, R., Trivedi, R. B., & Waelde, L. C. (2023). Family caregiver distress. Hogrefe Publishing.

Mast, B. T., & Yochim, B. P. (2018). Alzheimer’s disease and dementia. Hogrefe Publishing.

Pachana N. A., Molinari, V., Thompson, L. W., & Gallagher-Thompson, D. G. (2021). Psychological assessment and treatment of older adults. Hogrefe Publishing.

Wilz, G. (2024). Psychotherapeutic support for family caregivers of people with dementia: The Tele.TAnDem manual. Hogrefe Publishing.

World Health Organization (2023). Dementia. www.who.int/news-room/fact-sheets/detail/dementia

Zarit, S. H., & Heid, A. R. (2015). Assessment and treatment of family caregivers. In P. A. Lichtenberg & B. T. Mast (Eds.), APA handbook of clinical geropsychology (pp. 521–551). American Psychological Association. doi.org/10.1037/14459-020