Why dementia takes a huge financial toll on families

Caring for patients with dementia and Alzheimer's disease is far more expensive -- 57 percent more -- than caring for those with illnesses like cancer or heart disease, according to a study from researchers at Mt. Sinai. William Brangham discusses the findings with Dr. Diane Meier of the Icahn School of Medicine at Mount Sinai.

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    Now: A new study spotlights the soaring financial and emotional burden that many families are coping with from dementia and Alzheimer's disease.

    The cost of caregiving for those patients is now some of the highest of any illness.

    William Brangham has the story


    Researchers at Mount Sinai have just published a study showing that caring for patients with dementia and Alzheimer's disease is far more expensive than caring for those with illnesses like cancer or heart disease.

    According to the study, which looked at patients within the last five years of their lives, the total cost of caring for someone with dementia costs 57 percent more than those with other illnesses. And dementia patients and their families also pay 81 percent more in out-of-pocket expenses than other patients.

    This year alone, dementia will cost the nation $226 billion.

    Joining me now is Dr. Diane Meier from the Icahn School of Medicine at Mount Sinai. She wasn't an author of this particular study, but she's one of the nation's leaders in improving care for the elderly.

    So, Dr. Meier, what is it that most jumped out at you about this study?

    DR. DIANE MEIER, Icahn School of Medicine at Mount Sinai: I think what most jumped out at me, and I hope to the general public about this study, is the realization that so much of health care is not covered by Medicare or by regular insurance, and that a great deal of the needs of older adults who need help during the day, particularly those who have memory problems, come right out of the pockets of the patient and the family.


    So, is that why we see the huge disparity, why people who are caring for people with dementia are paying so much more of their own money to care for their loved ones?


    That is the reason.

    People with dementia, that disease is characterized by a progressive loss of ability to take care of yourself, to dress yourself, bathe yourself, feed yourself, to have judgment to be safe. And what that means is that you can't leave a dementia patient alone. So, families handle that either by having someone in the family give up their other responsibilities, give up their work in order to be with the person who has dementia, or by paying out of pocket to pay someone, an aide or a companion, to be with their loved one with dementia.

    Either way, there's a huge cost to the families that is not covered by Medicare.


    This study also highlighted that the costs fall disproportionately on blacks and single people and people with less education. Is that just a function of their relative financial situation?


    Mostly, it's a function of their relative financial situation.

    There are also some cultural differences in willingness to take care of vulnerable loved ones. Some cultures are much more committed to providing family-level care and personal care to loved ones who are ill or disabled than others, and certainly the African-American community has a very strong history of taking care of their own.


    You have obviously spent a good deal of your own career caring for people at the end of their lives. Have you heard stories like this from your own patients and from their families that these costs have been onerous?


    I have had many families who bankrupted their — for example, their parents' savings, completely spent down all their parents' savings, and then ended up spending their own savings.

    Their child's college savings account, for example, the money they had been saving for a mortgage had to be spent for the care of their parent who had Alzheimer's disease. And I remember one family in particular where one of the daughters had the responsibility for caring for the mom who had Alzheimer's disease, and she provided wonderful care to her mother for more than 15 years.

    And when her mother finally died, this sister had no job, no visible means of support, no skills, and was basically put on the welfare rolls because she had no income to fall back on, because she had devoted most of her adult life to the care of her mother.


    Yes, it's awful.

    So, put your policy-making hat on. If you were in the policy-making business, how do we address this? What would you do?


    Well, when Medicare laws were written, it said that Medicare should only pay for what is — quote — "medically necessary."

    And at that time, that was thought to be things like surgery or a hip replacement or treatment for a heart attack or visiting a doctor. But there wasn't a recognition at that time, because it hadn't yet happened, that old age was going to be very different in our era than it was back in the 1960s.

    Old age in our era is chronic disease that goes on for many, many years, sometimes more than decades, and it's characterized by people needing help to get through the day. And Medicare doesn't pay for that. Yet that is the dominant need of older adults and their families in our society.

    So, I think we need to rethink how we pay for health care and pay for health care in a manner that actually meets people's needs.


    This study obviously looked just at financial costs, but, obviously, caring for someone with dementia comes with a huge emotional cost as well. I mean, that's not even factored into this study.



    Dementia is an extremely difficult and challenging, serious illness. I think it is the hardest illness I have ever participated in caring for, worse for the patient and family than, for example, cancer or heart disease or many of the other dreaded illnesses, because what happens is the person's mind begins to disappear while their body is still there.

    So, there is this complicated situation of the person still being in front of you, but they're not inside anymore. And so the grieving and the loss begins many, many years before the person's death. And I think the suffering, not only for the person living with the memory loss, but also for the people who love that person, is enormous.


    All right, Dr. Diane Meier of Mount Sinai Hospital, thank you so much.


    Thank you.

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