Advising Alzheimer’s Caregivers About Assisted Living

Allan S. Vann is a retired public school principal and a caregiver to his wife, Clare, a retired high school teacher who received a diagnosis of early/young-onset Alzheimer’s disease when she was 63 years old. He maintains a blog at https://allansvann.blogspot.com, where he posts copies of his published articles about their journey with Alzheimer’s.
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I am a caregiver for my wife, Clare, who was diagnosed with early/young-onset Alzheimer’s disease (AD) in 2009. Four years later, as Clare started to decline much further and at a faster pace, my caregiving responsibilities started to multiply quickly. Daycare programs were not providing me with enough respite time, and we would often argue about little things when we were together each afternoon and evening, although we had never argued like that before. Our “fairy tale” 46-year marital relationship was becoming increasingly strained. Whenever I would remind Clare to do something she had forgotten, she would yell at me, telling me she “was not a baby” and that she didn’t need me to remind her of what she needed to do. But, of course, as her AD worsened, she couldn’t remember the most basic things she needed to do, and I had to remind her again and again. I still love Clare as much as I ever did, but our relationship began to morph from one of loving husband-wife to one of loving parent-child.

I knew that it was time for me to think about an assisted living placement at some point in the near future, so I started visiting websites of every assisted living residence (ALR) in our area. I had listened carefully at my weekly spouse support group meetings at the Long Island Alzheimer’s Foundation (LIAF) and read carefully in my online support group chat rooms whenever others discussed ALR placements. I learned many things. For one, I learned that since Clare has AD, I needed to find an ALR with a separate “lockdown” wing for resident safety since many people with AD have a tendency to wander. I also learned how fortunate I was to already have long-term healthcare insurance that would pay the considerable ALR monthly expenses after a 100-day deductible period.

But the most important thing I learned from members in my support groups—or so I thought at that time—was that I had better not miss “the window of opportunity” to place Clare in an ALR. Several group members noted that if a person with AD declines significantly in the ability to handle even one of the activities of daily living (ADL) independently, that ALR window may be closed. With Clare continuing to decline faster and faster, my stress started increasing exponentially. I worried that by the time I was emotionally ready to place Clare, she might no longer be able to ambulate, eat, bathe, transfer, or dress independently, or she might be completely incontinent. I was led to believe that if I missed that “window,” my only option would be to place Clare in a nursing home or hire live-in help when I could no longer care for her by myself. A number of support group members also said that even for someone already residing in an ALR, worsening declines in some key ADL areas (eg, inability to transfer without assistance or complete incontinence) could cause the ALR to discharge the resident. One person did say, however, that an ALR allowed her husband to remain when unable to transfer after she agreed to pay for a private health aide to provide additional assistance. But I was told that practice was very unusual.

As I worried more and more about missing that “window,” I prepared a detailed evaluation form to bring with me on ALR tours. I revised questions from online sources, added my own questions, and put together a new form. I then asked two exceptional LIAF social workers, Alana and Tori, to collectively review my form. They suggested several additional questions, the last one being, “What circumstances would result in a resident being discharged from the facility?” Evaluation form in hand, I then scheduled tours of six different ALRs. The form I created can be downloaded as a free PDF here. Please consider sharing it with the caregivers of your patients.

Clare and I liked the first ALR we visited. That evening I was reviewing all of the director’s responses to my questions, trying to process all we had seen and heard that afternoon during our tour. I realized that I had forgotten to ask the question about discharge conditions, so I e-mailed the ALR director requesting this additional information. Her response was totally unexpected, and one that sent me to do more research before visiting any other ALRs. The director said that, due to their EALR certification, they would not need to discharge Clare unless she was a danger to herself or others, or had such acute medical needs that she needed to be under a physician’s supervision 24/7.

EALR certification? The ALR director had never mentioned anything about EALR certification during our tour. I didn’t even know what those letters stood for. After receiving the director’s e-mail, I double-checked both the facility’s website and the brochure she had given me, but I could find no mention of EALR certification. I now had a lot of information about that ALR’s staffing, activity programs, common areas and facilities, meals, sleeping accommodations, and costs. However, I also realized that I still needed to learn more, so I went online to research EALR certification.

In a letter written by Robert P. Dougherty, director, Division of Home and Community-Based Care, New York State Department of Health, to the administrators of ALRs in New York State in 2005, an ALR, even one with a “lockdown” area for residents with Alzheimer’s, is only licensed to provide a “basic” level of care (www.health.ny.gov). As such, an ALR is not permitted to admit people with AD if they are unable to independently walk, climb stairs, transfer (or are chairfast), or have unmanaged incontinence. It turned out that my support group was correct about that fact, but I mistakenly thought this was applicable to all ALRs in New York. Not true. I also learned from this website that some ALRs in New York have an Enhanced Assisted Living Residence (EALR) license and/or a “Special Needs Assisted Living Residence” (SNALR) license that permits them to admit and retain people with AD at any level of care with just one exception: prior to admittance, that person cannot require 24/7 skilled nursing or medical care. However, if after admission residents should require this advanced level of care, an ALR with EALR or SNALR certification can provide that 24/7 skilled nursing or medical care. The effect of this continuity of care enables AD residents to age in place without needing to be discharged.

This new information was a complete game changer for me. After my research that evening, all that stress to place Clare in an ALR before missing that “window” was gone. Sure, she was continuing to decline, but she was a long way from needing 24/7 skilled nursing or medical care. I knew that evening that I would only place Clare in an ALR that had EALR or SNALR certification, so there was no “window of opportunity” to miss. There was no “window” at all. I was relieved to know that in whatever ALR we would select, Clare would not be automatically discharged to a nursing home or hospice in the future as her condition worsened, with the exception of two caveats: being a danger to herself or others, or requiring 24/7 physician supervision. Clare’s ALR would be her “final home.” With this knowledge, I then called the other ALRs we had planned to visit. Those without EALR or SNALR certification were immediately eliminated from consideration.

During our tours, I also learned that ALR admission wait list policies varied. In some ALRs, when a prospective resident at the top of their wait list is informed of the availability of a bed and rejects it, he or she then goes to the bottom of the wait list. However, in other ALRs, the prospective resident remains at the top of the wait list until he or she either accepts the next available room or requests removal from the wait list. Since we could not be sure of exactly when Clare would need to be admitted to an ALR, we also eliminated all facilities with unfavorable wait list policies.

Each ALR we visited had a different ambience. We observed staff interactions with residents and resident interactions with each other during meals and activities. We saw many differences in quality, scope, and location of activities and activity centers, bedrooms, lighting, furniture, and a variety of amenities. We noted that some ALRs had visiting clergy and on-site weekly religious services. Some even provided escorted transportation to nearby churches and temples. After we completed our tours, we agreed on the EALR-certified facility that we thought offered Clare the best likelihood for quality care and happiness, and I placed Clare’s name on their admission wait list. Ironically, the ALR we selected was the first one we visited, the one whose director enlightened me about the existence of EALR certification.

The Empire State Association of Assisted Living cites data reported by the New York State Department of Health in 2008, which indicated that more than 65,000 beds are available in facilities that provide assisted living in New York. Of that total, fewer than 8,000 beds were in facilities with EALR or SNALR certification.¹ I have since learned from AD spouses across the country that it may be hard to find other states with ALRs that enable residents to “age in place.” However, I also know that many states revise ALR regulations as their population needs change.

Take-Home Message  

Healthcare professionals and social workers who counsel AD caregivers may not always have time to remain well informed about state certification policies and practices of ALRs in their local communities. However, they do have time to advise caregivers to ask questions about ALR admission, discharge, aging-in-place, and wait list policies. I am indebted to Alana and Tori, the two LIAF social workers who suggested I ask such questions. Even if there are no ALRs with the equivalent type of EALR or SNALR certification in your community, there still may be significant differences among local ALRs. Informing caregivers to ask about such differences can be extremely helpful. This knowledge can be a game changer for clinicians who offer counsel to patients and their caregivers—just as it was a game changer for me.

Reference

1.     Empire State Association of Assisted Living. Frequently asked questions. www.ny-assisted-living.org/consumer/faq.htm. Accessed December 5, 2013.

Also read the follow-up commentary by Dr. Zimmerman, "Considerations When Selecting an Assisted Living Residence."