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Challenges Increase for Family Caregivers when Cognitive and Behavioral Issues are Present

Carrie Steckl earned her Ph.D. in Counseling Psychology with a Minor in Gerontology from Indiana University – Bloomington in 2001. She has spent over ...Read More

When there are over 42 million unpaid family caregivers in the United States, it’s important to understand their situations, needs, and challenges. That’s why I was pleased to see a new report out from the United Hospital Fund and the AARP Public Policy Institute called Family Caregivers Providing Complex Chronic Care to People with Cognitive and Behavioral Health Conditions.

The report is based on research indicating that family caregivers who provide complex medical care to people who also have cognitive and behavioral health conditions face especially demanding challenges, such as high levels of depression and stress. Sixty-one percent of caregivers in the study reported feeling stress “sometimes to always” as a result of juggling their caregiving responsibilities with work and family obligations.

Interestingly, people with cognitive and behavioral conditions such as dementia were generally sicker than other family members needing care. These folks often had chronic illnesses such as heart disease, stroke, hypertension, arthritis or diabetes at higher rates than those without cognitive and behavioral conditions. To add to the complexity, family caregivers of people with dementia and similar conditions often encountered resistance from those they were trying to help. This made a key medical/nursing task – managing medications – much more difficult.

I agree with the report’s conclusion that these family caregivers are among those most in need of training, resources, and support. The report made several recommendations to accomplish this task:

  • Focused caregiver assessments to better detect vulnerable caregivers and their specific needs
  • Better integration of behavioral and physical health programs (right now there is a disconnect between the two)
  • Increased efforts to set up respite and adult day care programs for family caregivers
  • Training of family caregivers to better understand and respond to challenging behaviors
  • Training of health care providers to work more effectively with family caregivers
  • Revisions of current support and training materials for family caregivers to reflect holistic care management of the entire person, rather than just the specific medical conditions the person is experiencing

I applaud the United Hospital Fund and the AARP Public Policy Institute for conducting such important research and compiling it into a useful report. Let’s hope the organizations and systems that can implement the report’s recommendations will take these research findings to heart.


Reinhard, S. C., Samis, S., & Levine, C. (2014). Family caregivers providing complex care to people with cognitive and behavioral conditions.

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