iiinova — where your digital self keeps evolving

Kenneth Lam @drklam.bsky.social · 04/08/2025

These are averages -- of course. I do not mean to diminish the experience of those who have had terrible experiences with LTCFs, as I know this happens too. These results are also from 2011-2019 and may change alongside an evolving LTCF landscape.

110

Kenneth Lam @drklam.bsky.social · 04/08/2025

...but here we show that in older adults, life outside of an LTCF in the months before entry was not conducive to community-building either, and that LTCFs are offering more life activities to an extent.

110

Kenneth Lam @drklam.bsky.social · 04/08/2025

For policy, I think our results complicate Olmstead: archive.ada.gov/olmstead/olm.... This Supreme Court case ruled individuals have the right to live in the community because: "confinement in an institution severely diminishes the everyday life activities of individuals"...

archive.ada.gov

Olmstead: Community Integration for Everyone -- About Us Page

The ADA Home Page provides access to Americans with Disabilities Act (ADA) regulations for businesses and State and local governments, technical assistance materials, ADA Standards for Accessible Desi...

110

Kenneth Lam @drklam.bsky.social · 04/08/2025

From a research standpoint, we also need to look at whether these activities are meaningful and if this improves quality of life -- though these can be hard to measure reliably given ~50% of residents have dementia.

110

Kenneth Lam @drklam.bsky.social · 04/08/2025

Of course, we could do better; it would be good if more residents went out for enjoyment, if activity were culturally tailored, and if we resolved issues of segregation and inequitable access to high quality long-term care.

110

Kenneth Lam @drklam.bsky.social · 04/08/2025

Taken together, I think this highlights how LTCFs are doing important but unglamorous work promoting activity among people going through a very difficult phase of life.

110

Kenneth Lam @drklam.bsky.social · 04/08/2025

3) In exploratory analyses, men, nursing home entrants, and residents who were Black, Hispanic, and of other races/ethnicities were less likely to participate upon entry.

110

Kenneth Lam @drklam.bsky.social · 04/08/2025

2) Upon entry, going out for enjoyment decreased (-14.1%). But participating in clubs (+15.6%) and attending religious services (+12.6%) increased. This suggests new LTCF residents are more likely to participate within their new community compared to their old one.

110

Kenneth Lam @drklam.bsky.social · 04/08/2025

These are the findings. 1) Social participation drops for all activities before entry. So before people move, their social life is already starting to contract.

110

Kenneth Lam @drklam.bsky.social · 04/08/2025

One question asked each year is about social life: Did you visit with others? Go out for fun? Attend religious services? Participate in clubs? Volunteer? This study analyzes the response for people who moved into a nursing home or assisted living, before and after entry.

110

Kenneth Lam @drklam.bsky.social · 04/08/2025

We again turned to @nhats-nsoc.bsky.social to help us answer this question. In this study, adults 65+ (or someone who knows them well) are interviewed each year. We found 606 older adults who moved into an LTCF between 2011 and 2019 and examined their interview responses.

110

Kenneth Lam @drklam.bsky.social · 04/08/2025

So which is it? On average across the US, does moving into an LTCF mean the death of your social life? Or does moving actually increase how much you engage with others?

110

Kenneth Lam @drklam.bsky.social · 04/08/2025

Most of us want to avoid an LTCF at all costs because we are afraid of them. But one-third of us will move into an LTCF in our lifetime. I've also met residents who -- having moved in and adjusted -- have nothing but good things to say about living in these communities.

110

Kenneth Lam @drklam.bsky.social · 04/08/2025

New paper in @jamainternalmed.com! In it, we use data to examine a commonly held belief about what moving into a nursing home or assisted living facility (also known as a long-term care facility; or LTCF) does to your social life. jamanetwork.com/journals/jam...

jamanetwork.com

Socializing the Benefits of Entering Long-Term Care

In a 2024 US national poll 33% of older adults (age 50-80 years) reported experiencing loneliness and 29% reported feeling socially isolated.1 Nursing homes and assisted living facilities (collectivel...

165

Kenneth Lam @drklam.bsky.social · 04/03/2025

Thank you also to @agsjournal.bsky.social for publishing our work, to Daniel Dohan for his mentorship, Landon Haller for his help recruiting patients, and the rest of my team for helping me think through what we heard.

020

Kenneth Lam @drklam.bsky.social · 04/03/2025

I am extremely grateful to the residents who were willing to talk with me. We will be printing copies of this manuscript and sharing it with them.

110

Kenneth Lam @drklam.bsky.social · 04/03/2025

3) Meanwhile, there is much to improve about the long-term care system in terms of transparency and reduced fragmentation.

100

Kenneth Lam @drklam.bsky.social · 04/03/2025

2) In-the-moment planning in hospitals and post-acute rehab is probably more useful than advance planning, as almost all moved after sudden events (cardiac arrest, CNS infection, falls): "It's a blindside." "You don't know what you miss until you aren't able to do it."

100

Kenneth Lam @drklam.bsky.social · 04/03/2025

What are the takeaways? 1) It may be useful to think of potential residents as planners, avoiders, or accepters -- and what each wants or needs in terms of information and resources may be distinct. Planners may want details, while avoiders may want to know more about their rights.

100

Kenneth Lam @drklam.bsky.social · 04/03/2025

If you want to prepare, there is no central agency to help you and no way to envision what this phase of life might look like. If you want to avoid it, no one is transparent about your choices and risk and people take away your control. If you want to accept it, you just have to be lucky.

100

Kenneth Lam @drklam.bsky.social · 04/03/2025

I came to see their stories as a back and forth between individual coping strategy (eg, prepare, avoid, or accept) and a long-term care entry system that flummoxes each coping strategies.

100

Kenneth Lam @drklam.bsky.social · 04/03/2025

C. Some encouraged others learn how to accept it; they seemed the most grateful and happiest to be in the facility. "How do you come by people that are there when you need them? I don't know, are they gifts from heaven?…"

100

Kenneth Lam @drklam.bsky.social · 04/03/2025

B. What did others hope their listeners could avoid? 1) The restrictions, joylessness, and lack of stimulation in the facility. 2) The loss of autonomy, mostly through how others seemed to hide information and choices from them.

100

Kenneth Lam @drklam.bsky.social · 04/03/2025

A. What were some unprepared for? 1) Facilities were often not "as advertised" -- hence they recommended investigating. 2) Care and information is fragmented -- hence it requires planning to get all your care to fit together 3) Their priorities changed -- hence really think about what you want.

100

Kenneth Lam @drklam.bsky.social · 04/03/2025

Things got interesting when we examined our transcripts for WHY residents gave this advice. Advice rarely came from good experiences. For example, no one said "prepare" because preparation had helped them. They said "prepare" in response to all the things they couldn't prepare for.

100

Kenneth Lam @drklam.bsky.social · 04/03/2025

We had 14 residents share their stories, for which I am so grateful. Advice fell into 3 camps: - prepare yourself (eg, investigate, plan, and really think about what you want) - avoid it (eg, stay away for as long as you can, don't trust other people) - accept it (eg, try not to plan too much)

100

Kenneth Lam @drklam.bsky.social · 04/03/2025

I'm proud to announce our new paper! Moving to a long-term care facility is a major late life decision. I know I've often benefitted from others' advice for my major life decisions. So I wondered: what advice is there for moving into an LTCF? agsjournals.onlinelibrary.wiley.com/doi/epdf/10....

agsjournals.onlinelibrary.wiley.com

“Nobody Can Be Equipped for This”: Advice From New Residents of Long‐Term Care Facilities

Background The transition into a long-term care facility (LTCF) is difficult for older adults, prompting calls for clinicians to help guide and plan. Yet we know little about how those with lived ex...

142