Grace Knorr, LISW-S is a senior social worker at Cleveland Clinic Lou Ruvo Center for Brain Health who specializes in Alzheimer’s disease and brain health. In this insightful interview, she discusses the intricate landscape of home-based elder care, addressing the delicate balance between maintaining independence, managing health challenges, and supporting both caregivers and those receiving care.
WAM: Surveys show that between 77 and 90% of Americans wish to remain in their home as they age. What are some of the benefits and unique challenges of caregiving at home?
Knorr: Older adults may experience better health outcomes when they receive care in a familiar, supportive environment. Remaining in the home may allow for better emotional well-being, personalized care, and greater family involvement. However, most homes are not designed for people with mobility limitations or other disabilities. The potential for caregiver burnout is high when care is provided in the home and both the individual and caregiver are at substantial risk for social isolation. I work with families to explore additional resources to address these challenges if the overall goal is to remain at home.
WAM: The likelihood of a dementia diagnosis increases with age, especially over the age of 85. How do you prepare families who are caregivers for what is ahead in the face of a dementia diagnosis?
Knorr: Preparing families for the progression of dementia is not a one size fits all approach. I work with each family to assess their prior knowledge of the disease, learn what, if any plans are in place and assess their readiness to engage in future planning. I stress that each person experiences dementia differently but work to create a care plan that addresses all potential risks. Regardless of age, a dementia diagnosis can be frightening for both the individual and their family and I aim to offer both practical planning and emotional support.
WAM: An estimated 11 million Americans today provide unpaid care for loved ones with dementia or Alzheimer’s disease, the majority being women. What toll does this vocation take financially, physically, and emotionally, and how might caregiving be different for women versus men?
Knorr: The impact of unpaid caregiving is overwhelming. Caregivers often experience a loss of income, emotional distress and may be at higher risk for chronic health conditions. These challenges are amplified for women as they are more likely to serve as primary caregivers and frequently endure most of the caregiving responsibilities.
WAM: What are your top tips for caregivers to help avoid burnout?
Knorr: This is such an important topic! There is no one-size-fits all approach, but caregivers have a challenging time prioritizing their own needs. My top tips are to take breaks, schedule respite, lean on your support system and establish with a therapist who has specializes in chronic illness or family caregiving.
WAM: Any special tips for caregivers as they prepare to celebrate the holidays with a loved one with Alzheimer’s disease or another form of dementia?
Knorr: Caregivers may feel overwhelmed with upholding traditions despite the changes brought about by dementia. I recommend adjusting expectations by reducing the size of gatherings or changing the time of day you celebrate to accommodate potential challenges that may arise in the evening (sundowning). Prioritize making memories while being flexible and remember to schedule respite in the new year to avoid burnout!