The Cost of Caregiving

About Juliet Holt Klinger

Senior Director of Dementia Care

Juliet is a passionate advocate for people living with dementia and their families. She is deeply committed to improving the cultural acceptance of those with cognitive differences. As our gerontologist and Senior Director of Dementia Care, Juliet develops person-centered care and programming for Brookdale’s dementia care communities. But if you ask her, Juliet says she continues to learn every day from the true experts, those living with dementia and their care partners. Juliet believes we need to move beyond the concept of caregiving, which implies a one-sided relationship, and embrace the idea of care partnering. Care partnering is about relationships built on cooperation—a two-way street promoting person-centered care and mutual feelings of purpose, where the person living with dementia also plays a strong role in shaping their care and daily routine. We are here to partner, learn and grow with our residents and families to make aging a better experience. After volunteering in nursing homes in high school, Juliet knew she wanted to work with older adults. While working on her bachelor’s degree in social work at the University of Iowa, she completed an Aging Studies Certificate program, before there were formal gerontology programs available. At Iowa, Juliet also had the chance to study with pioneers in the field of dementia care, an opportunity that shaped her passion for caring for those living with dementia. Trained as a gerontologist, with a master’s degree from the University of Northern Colorado, Juliet joined Brookdale in 2004. She is a seasoned senior living executive with more than 30 years of experience designing and executing innovative Alzheimer's and dementia care programs and living environments in both assisted living and skilled settings.

A friend of mine recently confided in me about her concerns with her mother’s dementia and how full-time caregiving was affecting her life. She was overwhelmed, the time, energy and financial strain were taking a toll. Having worked with scores of family caregivers throughout my career, I understand what she is experiencing. I know the cost of caring for a loved one at home can be staggering—financially, emotionally and physically.

Unfortunately, her situation is all too common. Statistics tell the same story. On average, caregivers spend 24.4 hours a week providing care to their loved one with nearly one-quarter dedicating 41 or more hours of care a week, says this Caregiving in the US 2015 Report. Caregiving isn’t always a short-term job, either. The typical caregiver provides care for an average of five years and expects to continue for another five years.

Financial costs

Many caregivers are shocked at the stunning cost of caring for someone living with dementia. On average, caregivers lose more than $15,000 in annual income, points out the Alzheimer's Association, whose survey found many had to cut back on their own family’s food and medical care because of insufficient income. The Shriver Report: A Woman's Nation Takes on Alzheimer's found that the average cost of care for someone living with Alzheimer's is $56,800 per year. Of that cost, 60 percent — $34,500 per year — is covered by the family themselves. Although the bulk of that is in uncompensated care, families sometimes pay out of pocket for expenses as well.

As with many aspects of dementia, it is vital for those diagnosed with the disease to talk to their families about their wishes. Talk about formal care options, like long-term care or assisted living, discuss home health or ask about dividing caregiving responsibilities between family members. Once you understand your loved ones goals, you can make financial plans accordingly.

The Alzheimer’s Association is a great resource for understanding the costs of caregiving. The AARP has a site devoted to caregiving resources and pre-planning.

Impact on physical and emotional health

The demands of looking after a relative often affect the caregiver’s own health. According to the Alzheimer’s Association, nearly 60 percent of dementia caregivers say the emotional stress of caregiving is high or very high and about 40 percent suffer from depression.

Those who provide unpaid care (of any type) for 21 hours or more each week are particularly vulnerable to emotional stress and physical strain. On average, caregivers spend about $800 more per year on healthcare than non-caregivers, according to Brent Fulton, a coauthor of the Shriver Report. The 2010 Estimating the Impact of Caregiving and Employment on Well-Being report also notes that the number of positive activities caregivers engage in is reduced by 27.2 percent as a result of their responsibilities. The Family Caregiver Alliance has gathered additional sobering statistics on this issue.

I encouraged my friend to consider the impact this loving but very intense duty is having on her own life and whether it may be time to consider other options. I reassured her that doing so is not selfish – it can be for the best for everyone involved. I encourage all caregivers to do the same.