This week, I did a lot of thinking about aging in place and safety.
That’s in part because I ended up going to head-to-head with a local Adult Protective Services agency (APS), who was worried that my 91 year old fiercely independent patient with dementia was not safe to keep living in her own home as she’s doing.
Also, my Twitter friends brought my attention to the latest darling of the aging innovation press: a new start-up called Honor, promising “Home Care Built For Our Parents, and For You.” (Founded by an ex-Googler! Raised $20 million!)
So, seems like as a good a moment as any to write about what it can take, to support an older person in aging in place, and what might get in the way.
(Note: I haven’t read it but I’d be remiss if I didn’t mention that gerontology professor Stephen Golant has recently published a book arguing that the aging in place model is being oversold; see this good article about the book “Aging in the Right Place” for more.)
Betty, a 91 year old woman who wants to age in place
“Should she still be living at home?”
I get asked a variant of this question all the time. It’s what families worry about and why geriatric care managers sometimes consult me.
Although this was not, actually, why Betty’s care manager initially contacted me last fall. (Note: I’ve changed Betty’s name and some identifying details, and her family has given me permission to write about their story.)
Rather, I was asked to see 91 year-old Betty because she’d developed memory problems over the years, and was now refusing to leave her house to see her usual PCP. Which was in itself not seen as a problem, other than the fact that Betty takes thyroid medication and after two years of not coming in, the PCP had said no more medication refills until she comes in for a thyroid blood test and follow-up visit.
Betty, you see, had never liked going to the doctor. She was a life-long medical minimalist.
She was also a life-long independent and a bit of a loner. She’d never married, and she’d been living in her home for 50+ years.
But unlike many older people who live alone, Betty actually had a pretty robust support network:
- She had three nieces, one of whom was her legal power of attorney for health and finances. None lived in the area but all were devoted to her and she spoke to family by phone several times per week.
- She had geriatric care management services via a local agency, which her nieces had arranged for a few years ago. When I met her, Mary had had the same care manager for three years. The agency was also providing two hours/day of in-home care, during which a person would fix a meal for Mary, put out her medications, and handle some light housekeeping.
- She had a friend who’d been visiting every weekend for years.
When I met Betty, I found her to be fairly nimble on her feet. She could get herself up from a low chair, bend over and pick things up off the ground, and she used a cane to get around her house pretty easily. Was she a fall risk? Of course, but overall her mobility was fairly good for her age.
She was also forgetful, but otherwise a pretty good conversationalist. Unsurprisingly, she couldn’t tell me about any chronic health conditions, and wasn’t sure of her medications. She tended to pooh-pooh my inquiries re her health and her doctors, telling me she is 5000 years old and doing pretty well, and not afraid of dying because that’s what happens to people when they are 5000 years old!
But what she didn’t like, she declared to me, was these people coming in her house, treating her as if she can’t take care of herself.
For people like Betty, I focus my medical care on assessing what’s going on with their physical and cognitive health, and then I make recommendations for optimizing these.She really did need to have her thyroid checked, so we coaxed her into accepting a home blood draw. This was a two-step process: we had to first see what she thought of the idea, and then plan on helping her through it once the technician arrived because people with dementia generally don’t remember agreeing to do something. Her thyroid test came back in a good range, so no change in medication was needed.
Otherwise, she wasn’t on medications that made her thinking worse, she wasn’t in pain, and she didn’t seem to be depressed. I recommended a little more socializing, if possible, along with walking and physical activity, but it wasn’t clear we’d get her to do much more, since she was very opinionated and a bit resistant to the help she was already getting.
The other thing we did together, as a team, was plan for future health crises or events. I worked with Betty and her nieces to complete a POLST.
And I talked to the nieces and care manager about falls. There really wasn’t much to recommend regarding fall prevention; Betty wasn’t on any risky medications and she was not going to consider Tai Chi classes. But what if she did fall? She had a pendant device but wasn’t wearing it when I visited. And she didn’t want to wear a watch.
So instead, the family installed one of the new home motion sensor systems, SafeInHome. That way, if Betty didn’t move the way she usually did for a while, the family would be alerted.
Adult Protective Services gets involved
One day last December, Betty’s smoke detector started to beep, because the battery was getting low. So she called the fire department, and then she got a little stressed and anxious when they actually showed up.
They of course bundled her off the Emergency Department (ED), because here was a little old lady who lived alone and was confused. And the ED notified Adult Protective Services.
The following week, Betty called the police, because she decided one of the paid caregivers should leave her house sooner than expected, and then took action to have the police help her with the “intruder.”
We decided that we needed to create an information packet, to help emergency responders understand her situation if they ever had to come again. So we wrote a summary with the information we thought was most important.
What we put included in Betty’s info packet
- Her name, date of birth, and that she lives alone in her own home but has someone visit every day.
- Name and contact info for her niece/DPOA, and also for her care manager.
- Her key health conditions (including her dementia diagnosis), and her medication list.
- What her usual physical and cognitive abilities are.
- What her goals and preferences are regarding medical care. This included a request to not take her to the ED unless she was badly injured or otherwise seemed very ill. We also included a reminder that her dementia gets worse when she’s stressed or in new places.
- A copy of her POLST form, which indicated DNR and otherwise selective treatment ok.
- A summary of her care and safety plan, including the fact that her stove is disconnected, that someone brings her meals, and that a home sensor system monitors for unusual lack of activity.
We posted the packet on the fridge, where we hoped it would be easy for an emergency responder to find.
Is Betty safe to live at home under these circumstance? The positive risk-taking approach
Obviously, there is no such thing as perfect safety. And as an older person’s abilities decline, they become more vulnerable.
But we all felt that Betty had been very clear about her priorities and preferences, even though she now lacked the insight to judge the safety of her own situation. And we felt that the burdens and risks of the alternatives — forcing her to accept more hours of care, or moving her to a memory facility — would be substantial.
Essentially, we went through a process of positive risk-taking.
I actually used this language with Betty’s family and care team, because last November I read this fantastic — and easy to read — UK report on positive risk-taking and dementia-friendly communities, by the Joseph Rowntree Foundation. This is essentially an approach we use in geriatrics here in the US, but I thought formulating it as “positive risk-taking” was a terrific idea.
Here’s an excerpt that summarizes what this process needs to involve (from page 7 of the PDF):
These types of decisions are not easy, they require:
- Everyone who will be reasonably affected by the decision to be involved, in varying capacities.
- Information and detailed thinking throughout, with a plan to manage the likely risks of whatever option is chosen.
- Clear knowledge of the person’s abilities and level of understanding of the risks.
- Clear understanding of the benefits a person gains in terms of a positive outcome from taking a specific risk.
- A good plan in place, with the support that can reasonably be made available, so the person taking a risk feels as safe as possible.
- Anticipation of how things could go wrong, with a reasonable crisis response or contingency plan in place.
What happened with APS
An APS worker visited Betty in late December; predictably, Betty was upset at this unexpected visit and reportedly “chased her out of her home.” The APS worker talked with the care manager and said something about the situation being ok for now but suggesting that Betty should eventually be moved to another living situation.
I waited for APS to contact me and request records, but this didn’t happen until March, at which point the care manager contacted me and said APS wanted me to send in a “capacity evaluation.”
I am not going to go into capacity right now, but suffice to say this is a bit of a vague request and if you are going to ask a clinician to opine about capacity, you should specify: capacity to do what? (See this excellent handbook from the American Psychological Association and American Bar Association for more details.)
I ended up sending them copies of my clinical notes, and also a letter explaining my impression of Betty’s cognitive impairments and her capacity to make certain types of decisions. Regarding her home situation and plan for her care, I included a detailed description of our thought process, how we had weighed the pros and cons of our options for supporting Betty, and the roles that various members of her care team — including her paid in-home aides — were playing.
What I later found out is that this front-line APS worker was quite perplexed by all this. She’d been told to find out if the client has “capacity to give informed consent” and also that someone with this level of confusion is not safe with just two hours of care per day.
Hence my talk with the APS supervisor. Who, to her credit, was actually very willing to hear me out by phone, both regarding Betty’s situation and how APS can improve they way they reach out to doctors and families to get the right information and assess a client’s situation.
Because really, if we going to along the road of progress and incorporate more positive risk-taking, it’s perhaps not ideal for APS to focus on “Does the client have capacity?” and “Is the client safe?”
Instead, they need to request information on capacity — or perhaps just cognitive abilities and weaknesses — in a more specific way. (E.g. “Does the client seem to have capacity to determine whether she’s safe living in her current situation?” In Betty’s case the answer is no, but her family certainly has capacity for this decision.)
Also, they really need to develop a way of assessing whether an older person’s care team has done due diligence in assessing an older person’s vulnerabilities and in making a plan to help them thrive and be reasonably safe at home.
Which brings me to what it takes to age in place.
What it takes for better aging in place
It was a little funny to hear about this latest start up presenting itself as a solution to help people “age gracefully and comfortably in their own homes,” as I spent my week working to keep my aging patient in her home. (See here for a more detailed list of Honor’s features.)
Finding good in-home help is important. I do work with this aspect of the senior care industry a fair bit, and it’s true, they could use a little help modernizing. I’m personally tired of handwritten care journals. I also know that many families find it hard to find the right kind of caregiver, or struggle to find someone who will accommodate the hours they need.
But good in-home help is not enough. You also need:
- Help assessing the underlying physical and cognitive vulnerabilities. This step lays the foundation for trying to optimize physical and cognitive health and also for determining how much hands-on daily life help the older person should have. (BTW I have found that a senior’s daily caregivers are almost invariably involved in implementing the plan we follow for optimizing physical and cognitive health.)
- A process for weighing the benefits and burdens of your different options, whether you are thinking about health or housing or supervision. (And these three are often seriously intertwined in older adults.) In my experience, this requires both a good clinician and a good care manager or social worker who is familiar with the housing/services options. Maybe attempting to keep living at home is a pretty good plan — as it is for Betty — or maybe a move to assisted living has a better balance of benefits and risks.
- A crisis plan. You need to anticipate likely declines and/or health crises. If there’s a fall, how will the older person get help? Will EMS have the right information they come? Is there information handy on what values or preferences should direct the older adult’s medical care, in the event of an emergency?
- A plan to explain your plan to others. Especially when it comes to people with dementia, I’ve found I have to spend a lot of time pushing back against attempts to keep them safer. (Stock medical care designed for younger people is another problem often foisted upon the elderly, ostensibly to keep them “safer” from dying, but often does more harm than good.) So it’s good to have documentation, to help others understand what’s going on and what kind of positive risk-taking you might be undertaking.
To age in place takes more than good caregivers at an affordable price, although that’s essential.
It takes a team with the right clinical and social service expertise, the right kind of processes, communication, and re-assessment of the plan as things evolve.
Hopefully these start-ups will make it easier to find affordable caregivers. And I hope those caregivers will be ready and able to work with people like me, Betty, her family, and her care manager.
Last but not least: the origin story of Honor is that the founder one day realized he was scared when riding as a passenger while his aging mom was driving. His thought seems to have been “Aha! She’s getting older. How do I find her good caregivers?’
My response would be “Yes, find good help for her. But don’t forget to help her find out what’s underlying her driving changes. Vision problems? Cognitive changes? Another health change?”
All too often I see families jump to arranging caregivers and other solutions, before they’ve properly assessed what underlying health issues are driving the problems they see. It’s understandable, in that the average PCP often isn’t very helpful in assessing and mitigating those underlying health issues.
But if you’re trying to help an older person age in place, don’t forget about this. You need to identify and try to mitigate the underlying problems. The right hands-on caregivers will help you assess what is going on health-wise, and then optimize physical and cognitive health so that the older person can live the best possible life in those surroundings.