Tuesday, January 21, 2014

Advising Alzheimer's Caregivers About Assisted Living

I am a caregiver for my wife, Clare, who was diagnosed with early or 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.  Day care programs were not providing me with enough respite time, and when together each afternoon and evening we would often argue about little things ... 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 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.  And 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 health care insurance that would pay the considerable ALR monthly expenses.

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 that ALR “window of opportunity” to place Clare.  Several 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 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 ... such as 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 and we made our first visit.
We both liked the first ALR we visited, and that evening I was reviewed 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 emailed 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 doctor’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 email, I double checked both the brochure she had given me and their website, 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.
According to the NYS Department of Health website, an ALR, even one with a “lockdown” area for residents with Alzheimer’s, is only licensed to provide a “basic” level of care.  As such, an ALR is not permitted to admit people with Alzheimer’s if they are unable to independently walk, climb stairs, transfer (or are chairfast), or have unmanaged incontinence. 1   So 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” license (EALR) and/or a “Special Needs Assisted Living Residence” license (SNALR) that permits them to admit and retain people with Alzheimer’s 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 allows AD residents to age in place without needing to be discharged. 2

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.  Absent one of those two caveats ... being a danger to herself or others, or requiring 24/7 doctor 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 such 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, the prospective resident then goes to the bottom of the wait list.  However, in some ALRs, once at the top of the wait list a prospective resident who rejects an available room remains at the top until that person either accepts the next available room or requests removal from the wait list.  Since we could not be sure of just 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 onsite 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 (or poetic justice?), the ALR we selected was the first one we visited, the one whose director enlightened me about the existence of EALR certification.

The website of the Empire State Association of Assisted Living cites data reported by the NYS Department of Health in 2008 indicating more than 65,000 beds are available in facilities that provide assisted living in New York.  Of that total, fewer than 8000 beds were in facilities with EALR or SNALR certification. 3 I have since learned from AD spouses across the country that it may be hard to find other states with ALRs that allow residents to “age in place.”  However, I also know that many states revise ALR regulations as their population needs change. 

Health care 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 those you counsel ... just as it was a game changer for me. 

1.  Assisted Living Reform Act, State of New York Department of Health, pp. 2-3.  Available at: www.ltccc.org/key/documentsALRDearAdminLetter060305.pdf.  Accessed on 5/21/13.

2.  Assisted Living Reform Act, State of New York Department of Health, pp. 4-5.  Available at: www.ltccc.org/key/documentsALRDearAdminLetter060305.pdf.  Accessed on 5/21/13.

3. “Frequently Asked Questions.”  Empire State Association of Assisted Living,

p. 2.  Available at: www.ny-assisted-living.org/consumer/faq.htm.  Accessed on 5/21/13.

Assisted Living Residence Evaluation and Question Checklist

Date Visited: _______________________
Facility: ___________________________    Contact: ___________________________
Location: __________________________    Phone: ___________________________

Rating, 1-10 (10=Excellent, 5=Average, 1=Terrible)
Factor Considered
First impressions

Clean, cheerful, well maintained?________________________
Appropriate demographics?_____________________________
Residents seem happy/engaged?__________________________

Common areas

[  ] Game room:_______________________________________
[  ] TV room:_________________________________________
[  ] Movie room:______________________________________
[  ] Swimming pool:___________________________________
[  ] Library:__________________________________________
[  ] Computer room:____________________________________
[  ] Garden/walking paths:_______________________________
[  ] Other:____________________________________________


Is there a long wait list for particular rooms?________________
What furnishings are provided? [  ] Bed   [  ] Dresser   [  ] Desk   [  ] Nightstand   [Other]:________________________________
What furnishings can we add?___________________________
What safety features/amenities do bathrooms have?
[  ] Grab bars   [  ] Walk-in showers   [  ] Whirlpool baths  
[  ] Other:____________________________________________
Are there call buttons by the bed?_________________________
Are there smoke detectors/carbon monoxide detectors?________
Are TV/cable/phone provided? Costs?_____________________
Are all bedding/blankets/linen/towels supplied?______________
Are these changed weekly?______________________________

Resident care

Does each AD resident have a written care plan?_____________
Is family involved in this?_______________________________
How often is the plan reviewed/revised? ___________________
What is the staff’s role with assisting resident with activities of daily living (ADLs)?___________________________________
Does facility order/administer all medications? ______________
Does staff monitor personal hygiene? [  ] Bathing   [  ] Oral care
[  ] Other:____________________________________________
Does staff monitor continence issues?_____________________
Does staff observe for signs of higher care needs?___________
What is the role of the onsite nurse?_______________________
When does the resident see a physician? ___________________
Does facility assume responsibility for scheduling routine medical care (eg, annual physical, specialty monitoring)?_____
Are costs of all medications and physician visits included in the monthly facility fee?___________________________________
If not, may the family supply the medications and have the facility administer them as directed?_______________________
If a resident prefers to sleep until noon and skip breakfast, is that OK?________________________________________________
When is free transportation provided to residents?____________
Does facility wash personal clothing?______________________
How often is it washed?________________________________


Are background checks, references, and certification required of all staff?_____________________________________________
What special training has staff received for working with cognitively impaired residents?___________________________
Is the facility fully staffed on nights and weekends? __________
Is there a dementia wing?__________ If so, what is the staff to resident ratio in this wing?______________________________
What is the staff turnover rate?___________________________
How long are staff shifts?_______________________________
What if a resident is unhappy with the aide assigned to him/her?_____________________________________________
Aside from the nurse, are any other medical personnel onsite?______________________________________________

Activities and recreation

Aside from the daily program, are there selections of daily alternative activities if a resident doesn’t like a scheduled activity?_____________________________________________
How often are there trips or activities scheduled off-site?________________________________________________
Are any religious services held onsite?_____________________
If a resident chooses not to be involved in activities, will their aide ‘push them’ to become involved, or leave them alone?  Why?_______________________________________________

Food and dining

What are the scheduled times for meals in the dining room?______________________________________________
Aside from the 3 meals, are snacks available all day?_________
What types of snacks/refreshments are provided?____________
Is there assigned seating in the dining room?________________
If so, how is seating determined?_________________________
Can guests stay for dinner?______________________________
If so, where do they eat and what is the cost?________________
Can meals be eaten in rooms?____________________________


What daily/monthly costs are not included in the room rent?________________________________________________
Once admitted, how often and by how much can monthly cost be raised?___________ ____________________________________________________
What if a resident is unhappy and must be removed after a few days or weeks? What is your refund policy?_________________

Considerations for dementia residents and changing needs

Are all exit doors alarmed and all dementia residents in a secure lockdown wing?______________________________________
How many rooms are in the dementia wing?________________
What is the average age of these residents?_________________
How many are younger than 75 years?_____________________
Does an aide bring cognitively impaired residents to/from the dining room?_________________________________________
Does an aide bring cognitively impaired residents to/from activities?____________________________________________
Should residents need a higher level of care, how much notice is given to the family to make arrangements for transfer to a nursing home or other facility?___________________________
If higher level of care is needed, can residents remain in the facility if the family pays for additional private nursing help?______         
Do any staff members at the facility currently provide such help, or have they done so in the past?__________________________
Are there any other reasons besides higher care requirements or major psychiatric issues that would lead the facility to discharge a dementia resident?____________________________________________

Emergency and discharge considerations

Are there any resident needs that cannot be met at this facility?_____________________________________________
In the event of an emergency, what hospital will residents be taken to?____________________________________________
When will the family be informed of such events? Prior to transport?____________________________________________

Visitation considerations

What are the visiting hours each day?______________________
Can a spouse or family member sign out residents anytime?____________________________________________

Placement considerations and certifications

What is the typical wait period between your assessment and placement?___________________________________________
After placement, do you recommend a period of time before a spouse contacts/visits the resident, or is this a personal decision by the family?________________________________________
Does your facility have any special licenses or certifications that enable you to accept and keep residents at higher care levels?______________________________________________

This checklist is a companion resource to the article “Advising Alzheimer’s Caregivers About Assisted Living” by Allan S. Vann, which appeared in the January 2014 issue of Annals of Long-Term Care. Permission to copy and distribute this document is hereby granted by HMP Communications.


Published in Annals of Long Term Care, January, 2014, Vol. 22, No. 1,  pp.17-20.  Access at: www.annalsoflongtermcare.com/article/advising-alzheimers-caregivers-assisted-living

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