In your own practice, how does this issue usually come up?
Most often it’s brought up by family members, care providers, or sometimes friends who are accompanying patients to their visit. They’re asking, ‘Should we be thinking about a higher level of care?’ Sometimes patients themselves bring it up, but that’s less common. And sometimes, when safety is becoming an issue and it’s not being brought up, I will bring it up.
Are there particular signs indicating that it might be time for someone to get more help at home, or to consider a new living situation?
The big one is cognitive change, when someone is no longer able to take care of themself, or their care provider, such as their spouse, is finding it harder and harder to provide care, or maybe has their own health issues. If someone is living alone, how well are they getting by? Are there safety issues – are they leaving the stove on, or are they wandering?
There are also physical issues – weakness, various chronic diseases with symptoms like fatigue, shortness of breath – that can be limiting.
Some people can remain at home even without somebody else living there, with the help of aides who are typically paid. But that can be too expensive for a lot of people. For some, limited assistance is manageable, but frequent or 24/7 assistance may be out of their range.
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What’s your role in these situations?
My role is to figure out what the patient wants if they’re able to express their wishes – someone who maybe has some cognitive impairment, but not more than mild dementia. If their wish is, ‘I want to stay at home, no matter what,’ and especially if family is on board with that, then I will take that as a lead.
Some families make staying at home work for quite some time with family checking in, cameras, door alarms, and various technological tools. It’s never quite perfect, but it can work if there’s a way to make it work and everyone wants it.
Personally, I try to go along as long as possible with family and patient wishes unless it’s just untenable, but then it’s usually clear to everyone.
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Are there risks in continuing to live at home?
Certainly. The patient might fall and have a major injury. But if everyone’s OK with the risk, I certainly am. For many people, there’s more quality of life being in their home rather than in a facility. And, of course, bad things like falls and injuries can happen in facilities, too.
It sounds like the family’s ability or willingness to be involved is a big factor in whether an older person stays at home.
Yes, and the family might be all out of state, or really busy, and can’t lend a hand. Or the patient’s needs might be more than the family can handle. It’s best if there are many family members involved, but statistically, families are not as large as they used to be. When you usually had four or five kids, maybe one or two could step forward and be active caregivers. But if there are fewer kids, or no kids or no grandkids, maybe there’s less opportunity for that to happen.
Often there’s a spouse present. But when a spouse passes away, suddenly someone is alone, very lonely, grieving, and there’s depression. That can radically change the situation. I have one patient whose spouse passed away several months ago, and he’s moved in with his son, who is disabled so he’s there all the time, and there’s a grandson who is very involved, so it’s a great situation for him. Every situation is unique.
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How do you advise families who want to have a conversation with their loved one about moving somewhere else?
I try to have that conversation with everyone present rather than tell the family what to say to their family member, unless the family member has no ability to understand things. It’s important that it be an open discussion.
If the patient says ‘No, I want to stay home,’ that might become a negotiation. If the patient is competent and has the capacity to make decisions, the family can try to influence that decision, but it’s up to the patient to decide.
Occasionally, it’s my role to say, ‘You need to move,’ if there’s clearly a safety issue. But if someone is competent and just absolutely refuses, it’s hard to make that happen. And there are financial considerations, too – facilities are expensive.
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When it comes down to older people and their families deciding where to go, what role do you and your clinic play?
We tend to rely heavily on our social workers to help with these decisions. Sometimes, I pass on things I’ve heard from other patients. We see a lot of older people who are frail and transitioning to needing a different situation. We have a dementia team that supports caregivers. We just restarted a falls clinic to improve balance. We have clinical pharmacists and behavioral health people and on and on. We’re really a model for how a team can work.
No facility for older people is going to be perfect. It’s the food, or the noisy neighbor – things you can’t know until you’re there. There is no algorithm or formula to know which place will be best for which person. Maybe a move into memory care will be great for somebody, but someone else will be anxious and unhappy. There are so many variables, including how engaged the family is.
It’s a process. It’s important to individualize a human being and their family and try to do our best for them rather than use a checkbox. That’s the critically important thing.
