Out-of-Pocket Expenses Greatest For Families Caring For Dementia Patient

Amy S. Kelley, MD, MSHS Department of Geriatrics and Palliative Medicine Icahn School of Medicine at Mount Sinai New York, NY

Dr. Kelley

MedicalResearch.com Interview with:
Amy S. Kelley, MD, MSHS
Department of Geriatrics and Palliative Medicine
Icahn School of Medicine at Mount Sinai
New York, NY

Medical Research: Why is it so important to understand the financial burdens families may face in providing end-of-life care for a loved one and why do you think the burdens may be greater for dementia than for other medical conditions?

Dr. Kelley: Understanding the financial risks that older adults face in the last years of life is important for individuals and families, in order to plan and save, if possible. It is also important for our policy makers, in particular, to know about these costs so that this information can help shape health and social policy that will best serve our society. Households of those with dementia face the greatest burden of costs, on average, particularly with regard to out-of-pocket expenses and the costs of caregiving.  Many costs related to daily care for patients with dementia are not covered by health insurance, and these care needs, including everything from supervision, to bathing and feeding, may span several years.

Medical Research: Are there differences in Medicare benefits for dementia or mental health that lead families to pay more out of pocket for this condition than for other common problems such as heart disease, or do you think the dementia costs are tied to people needed specific care or assistance with daily life that is more expensive to provide? What is driving these costs for dementia?

Dr. Kelley: As mentioned above, people with dementia need supervision and assistance with many aspect of daily life in order to be safe and have the best quality of life as possible.  These needs are progressive and often continue for many years and so this creates challenges for families of those with dementia that can be different than for those with other illnesses.  Medicare covers medical care (doctors’ visits, hospital stays, surgery, etc), but does not pay for these critical components of daily care needs.

Medical Research: What could be done by Medicare to lower the cost burdens families face for end-of-life care for dementia patients?

Dr. Kelley: First, policy makers must consider these already large existing expenses for families when evaluating policies that may further raise the out-of-pocket cost burden for beneficiaries.  Next we must consider novel ways through both health and social policy to provide for the care needs of those with dementia, in their homes and in the community, so that older adults get the high quality care they need and deserve without impoverishing families.  This is critically important for the more vulnerable social and demographic subgroups: racial minorities, those with lower educational attainment, and unmarried individuals.

Medical Research: What if anything might families do to reduce their out-of-pocket costs? Would long term care insurance or supplemental Medicare coverage help, or are there things they can do to plan ahead for the time when the family may need to provide care for a loved one with dementia?

Dr. Kelley: The financial planning aspects of this question are beyond my area of expertise.  Certainly saving money for one’s older years, beginning at a very young age, is important to do when possible.  Long term care insurance may cover some of the care needs and for some families purchasing such a LTC insurance policy may be an idea to explore.  Supplemental Medicare coverage can defray the out-of-pocket costs of copays, deductibles, medications, or things like eye glasses, but typically do not cover caregiving costs.


Kelley AS, McGarry K, Gorges R, Skinner JS. The Burden of Health Care Costs for Patients With Dementia in the Last 5 Years of Life. Ann Intern Med. [Epub ahead of print 27 October 2015] doi:10.7326/M15-0381

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Amy S. Kelley, MD, MSHS (2015). Out-of-Pocket Expenses Greatest For Families Caring For Dementia Patient