BOSTON — Most of the 5.5 million Americans with Alzheimer’s disease are cared for at home and almost 15 million Americans provide this unpaid care, according to the Alzheimer’s Association. The intense, round-the-clock care takes an economic, medical and emotional toll on caregivers. For a better understanding, we spoke to Susan Antkowiak, who works as a care consultant.
Susan Antkowiak: Well the emotional toll, first of all, is profound. This individual is watching their loved one go through significant changes including difficulty providing for their own care.
The person with dementia may have personality changes or possibly behavioral changes that occur and certainly over time, due to the memory loss, they are no longer recognizing their spouse, their adult children, other important people in their lives. So as a caregiver, to witness that, is devastating and it signifies profound loss for them.
Bob Oakes: Can you give us an example?
Sure. Well, I’m working with many people but one person comes to mind. She’s a dedicated, lovely wife who cares for her husband at home. And frequently throughout the day he will approach her and say, excuse me, ma’am, I’m sure you mean well but can you tell me where my wife is?
According to one study, 33 percent of family caregivers report symptoms of depression. It’s got to be awfully tough.
It has to be awfully tough and this is a long haul — this is a lengthy disease, it goes on for many years, so dealing with that stress and strain over the years does lead to depression, hypertension — and the experience for most caregivers is to really put their lives on hold to care for their loved one.
Is there guilt?
There’s tremendous guilt, which is very unfortunate because this is a very difficult road, a very difficult journey, and yet caregivers continually feel that they’re not doing enough.
Before we started the series, we opened up our website so people could share their own experiences in terms of caring for family members who have Alzheimer’s. Many people talked about the stresses of caring for their loved ones. A couple of examples of what they said: “As someone with a background in health care, I thought I would be able to handle this with less stress, anger, guilt and depression.” And another person wrote “The hardest part for me is when I have to leave my mom in the care of others. How can they ever begin to know the person she was before this disease?”
Those are very common kinds of sentiments that we hear and they really strike such an emotional chord because the changes that accompany the disease mean that, No. 1, you’re losing the essence of that person, in a sense, but also your roles and your relationship with that person is changing, so it leads to a long-term experience of grief, really, because you’re sustaining so much loss over a long period of time.
So, years-long grief.
Years-long grief, this is a lengthy disease process, people can live sometimes up to 20 years with this disease, so that means for both people, for the individual with dementia and their care partners, this is a long road.
Is this one of the reasons why some caregivers become what’s called secondary patients — they have illnesses themselves? Are there studies that have measured this?
Yes, there are studies and it does show us, actually, it looks like almost half of caregivers do experience clinical depression. We do see studies that indicate increased hospital visits and emergency room visits for the caregivers. The stress and the strain and the physical care is also very challenging.
Let me ask about the economic costs of all this. Most family caregivers are unpaid. In 2010, according to the Alzheimer’s Association, family and friends provided 17 billion hours of unpaid care. Many of them had to take time off, some gave up jobs. What’s the financial toll on families?
Well the financial toll is huge, keeping in mind that this is typically something that families have not planned for. I’ll give you an example, actually: I’m working with a woman currently whose husband had to leave his job early, about five years ago, because he had Alzheimer’s disease, he could no longer perform the function of his job. Five years later, his wife made the difficult decision to leave her job so that she could provide his care at home.
So now no family income.
No family income and as many caregivers experience, they are also supporting their adult children. So they had a college student who was in Colorado who ended up withdrawing from college, coming back home, going to a community college and now working a full-time job so that she can contribute to the family.
Are there concerns that as baby boomers age, and many more have to deal with Alzheimer’s, that many of their children will be unavailable to help them should they get sick because, you know, families scatter and in the typical modern American family there aren’t as many kids as there were years ago?
That’s very much a factor and very much a concern and, yes, it is difficult for adult children who are at a distance to provide care for their parents. But, also, the financial uncertainty that so many families face means that they are having to determine: am I going to support my parents, do I support my own children? It’s very complicated.