A study published in the journal BMC Geriatrics explores the self-assessed well-being of informal care partners and professional caregivers who support people with dementia, such as FTD. The study provides insights that could help guide the development of support tools for improving the overall health of care partners on the FTD journey.

Caregiving Can Impact the Health of Professional Caregivers and Informal Care Partners, but Do They Experience It Differently?

Navigating dementia is complicated for all involved. Even once a specific diagnosis has been identified and legal and financial planning has been taken care of, managing symptoms and maintaining a comfortable quality of life for a person diagnosed becomes more complex as dementia progresses.

Caregiving can profoundly impact one’s health outcomes. Care partners, who are often spouses, children, or siblings of people with dementias like FTD, frequently do not have formal caregiving training when assuming their role, which only adds to the strain from the ambiguous grief of watching a loved one decline. Even with formal training, healthcare professionals like home care workers and nurses feel an emotional impact from caring for people with dementia, especially as they may be assisting multiple people diagnosed, along with their grieving families.

The study authors write that the negative effects of caregiving have been well documented, with some evidence of positive effects of caregiving as well. While both groups share similar responsibilities, their involvement in the care process is significantly different.

Previous studies have found that how care partners evaluate their caregiving can significantly affect their overall well-being. It hasn’t been well documented, however, whether these distinct caregiving experiences lead to different health outcomes or if they cause care partners and healthcare professionals to assess their well-being or appraise their caregiving differently. However, no definitive conclusion has been reached on whether self-assessment of health or psychological well-being is affected.

Predictors of Well-being and Self-Rated Health Vary Between Care Partners and Care Professionals

The authors surveyed caregivers in their home country of China to determine if psychological well-being and self-rated health varied between care partners and care professionals, and to compare these two aspects between the groups. They found that care professionals were more likely to appraise their caregiving positively than informal care partners and reported higher overall psychological well-being and health.

The two groups differed in their predictors for psychological well-being and self-rated health to a lesser extent. Among care partners, coping strategies were the main predictor of psychological well-being, followed by caregiving mastery. Healthcare professionals, meanwhile, were most likely to cite caregiving satisfaction, followed by caregiving intensity.

For self-rated health, care partners were influenced mainly by passive coping strategies and caregiving impact; based on the analysis performed on the survey data, the authors noted that people with passive coping skills and negative appraisal of their caregiving tended to have worse self-rated health. Passive coping strategies were also a significant predictor for the self-rated health of formal care providers, followed by caregiving appraisal and mastery. Talking to others on the journey, such as through a support group, can help bolster coping skills, while coordinating a team of specialists can aid in caregiving appraisal by providing families with better guidance on their loved one’s condition.

While coping strategies appeared to play a significant role in influencing the psychological well-being of caregivers, the influence of caregiving appraisal differed substantially between the two groups. The study suggests that it is not the challenges alone that affect the well-being of care partners but also the ability to navigate them, with negative appraisals of one’s caregiving ability leading to worse outcomes. Providing information on approaching different dementia symptoms can also boost outcomes by better preparing families.

Besides coping strategies, caregiving satisfaction and intensity were the most influential factors on healthcare professionals’ psychological well-being; the authors believed the latter to be closely related to overall job satisfaction. The authors write that ensuring a supportive work environment for healthcare professionals can leave them with a sense of fulfillment that sustains their well-being.

AFTD works to support care partners and people diagnosed by providing information and resources when they need them most. One of these resources is the Comstock Grant Program, which offers financial support to care partners and people with FTD for respite and quality of life. AFTD also provides information and resources for medical professionals to help them provide the best care possible for people on the FTD journey.

Navigating the diverse symptoms of FTD is difficult, but having adequate resources or support can help. Find support groups near you to connect with others who understand what FTD is like. If you have questions or concerns about supporting someone with FTD, AFTD’s HelpLine is here for you; contact the HelpLine at 1-866-507-7222 or info@theaftd.org.