Choosing a Nursing Home for a Loved One With Alzheimer’s

By Allan Vann, Huffington Post, March 28, 2016

In March, 2013, I knew that the time was approaching when I would place my wife, Clare, in an Assisted Living Residence (ALR). I did considerable research and chose eight ALRs that I thought would be good choices. Clare and I then went, together, to meet with the admission directors and tour each ALR. I brought along a checklist with questions about ALR daily activities, staffing, meals, etc. That September, Clare was admitted to an ALR.

This past winter, as Clare was becoming increasingly anxious, I had to hire a personal aide in order for her to remain in her ALR. At the same time, I began checking out nursing homes because as her anxieties increased, her active participation in ALR activities decreased. Clare’s participation in the ALR’s many daily activities was my main reason for keeping Clare in her ALR, but Clare was no longer enjoying many activities or she was too anxious to even remain in the activity room. In addition, personal aide costs, not covered by my long term health care policy, were increasing substantially each month as Clare was requiring more daily personal aide time.

Just as when choosing an ALR, I did my research and met with the admission directors at eight nursing homes. During my tours I also asked questions of charge nurses and other personnel in their dementia units. Following is a list of my questions. Hopefully, this list will be helpful to other caregivers when considering nursing homes for loved ones with Alzheimer’s. My first two questions were actually asked on the phone when setting up tours. Answers to one of these two questions caused me to remove several nursing homes from consideration and there was no need to arrange for a tour.

1. Does your facility accept people with Alzheimer’s who are still ambulatory? A number of prospective finalists were removed from my list due to responses to this question. Many nursing homes in my area do not have separate lockdown dementia units. As a result, I was told that until Clare was in a wheelchair they would not accept her due to the possibility of her wandering away from their facility.

2. Does your facility accept people with Alzheimer’s who have anxiety issues? Most admission directors said it would depend on their evaluation of how serious those anxieties were, but some said they wouldn’t accept anyone with moderate or severe anxiety issues.

3. Do any of your patients have or need personal daily aides to assist them with ADLs (Activities of Daily Living) such as toileting, bathing, or dressing? (None of the nursing homes I visited said that Clare would need a personal aide.)

4. Can I see a copy of your activity calendar for this month? Who leads these activities, a recreation aide or a volunteer? Would Clare be able to attend activities in other parts of your facility?

5. How many R.N.s are onsite 24/7 in the dementia unit? How many aides?

6. Are rooms private or semi-private? What is the monthly cost?

7. Do monthly fees increase as patients’ needs increase?

8. What are the visiting hours?

9. How many Alzheimer’s residents do you have in your unit?

10. Do you have a number of residents under the age of 80? (I asked this question because Clare has early or young onset Alzheimer’s and now, even after dealing with this disease for 8 years, she is still only 69.)

11. Is there a waiting list for rooms? If yes, if I placed my name on that list and I passed when the room became available, would my name remain at the top of the list for the next available room or would I go back to the bottom of the list?

12. What would be the reasons, if any, for discharge from your facility?

13. If a patient needs to go to the hospital, what hospital do you use?

14. Do you have a portable x-ray machine on the premises to hopefully avoid some unnecessary trips to the hospital ER? ( Clare has been sent by ambulance to a hospital ER several time in recent years to rule out possible broken bones due to falls. A portable x-ray machine indicating that no bones were broken might have made some of those hospital visits unnecessary.)

15. Do you have a psychiatrist onsite?

16. Does your facility have rooms available for families to have small parties or holiday get-togethers onsite?

I also asked a few other questions that relate to Clare’s personal situation. I hope some readers will find this list helpful.

‘Aging in Place’ With Alzheimer’s in Assisted Living Facilities

By Allan Vann, Huffington Post, March 14, 2016

New York has some Assisted Living Residences (ALRs) that have “enhanced assisted living” certification, which allows people with dementia to “age in place” as their disease worsens and their need for care increases. Residents in ALRs with such certification do not need to be moved to nursing homes, hospitals, or hospice facilities unless they require constant medical supervision or their behavior presents a danger to self or others. One of the reasons why I chose Clare’s ALR was because they had such enhanced certification. What I did not realize at the time I chose her facility, however, is that an ALR with enhanced certification does not necessarily provide “aging in place” care with its own staff.

As Clare’s needs for care increased due to worsening anxiety and confusion in recent months, I had to agree to hire a PDA ... personal daily aide ... in order for her to remain at her ALR. I was told that her ALR did not have sufficient staffing to assist individual residents during meals or to redirect residents who lose focus during activities.

Hiring PDAs quickly became an expensive proposition. The agency used by Clare’s ALR charges $22 per hour for the aide’s first 40 hours per week, and then $33 per hour for “overtime” ... any hours the aide works beyond 40 hours per week. The rate also increases to $33 an hour whenever PDAs work on holidays. Clare’s ALR wanted me to hire a PDA for 12 hours daily for a total of 84 hours per week, at a cost of nearly $2000 each week.

Refusing to pay that much to keep Clare at her ALR, I started checking out nursing homes. Ironically, even though nursing homes charge a lot more per month than ALRs, their costs are covered by our long term health care policies and they have sufficient staff to provide the care that I had been paying extra for at her ALR.

However, I wanted to keep Clare in her ALR for as long as she continued to enjoy the many daily activities and the pleasant social environment, so the ALR social worker and I agreed upon more limited daily hours of PDAs ... still expensive, but less costly than paying for 84 hours a week. This added expense for PDAs was not covered by our long term health care policies, but I decided it was an expense worth paying to keep Clare where she was. Her ALR had five to six hours of daily activities, as compared to only two or three daily hours of activities in any nursing home I checked.

When Clare started losing interest in her activities more and more, I knew that the time was coming quickly when I would move her into a nursing home. That switch from ALR to nursing home actually happened this past week when some health issues led to Clare being hospitalized. Hospital staff said she would need to be released to a nursing home for rehabilitation and physical therapy, so I withdrew her from the ALR and proceeded to make arrangements for her transfer directly to the nursing home I had chosen.

My experience has resulted in some words of caution to caregivers seeking ALR placements for loved ones. Should you also want to place your loved one in an ALR that allows “aging in place,” find out who pays for that extra care that may become necessary for them to provide that aging in place! Does the ALR have sufficiently trained staff to provide aging in place, or are you responsible for hiring PDAs? If you must pay for PDAs, find out for how many hours you may need to hire such aides, find out that cost and, if you have long term health care insurance, find out if PDA costs are covered expenses. If you will be responsible for paying PDA costs directly, that may affect your choice of ALR, or may cause you to select a nursing home instead of an ALR when it comes time for any placement outside of the home.

Caregivers fortunate enough to have the money to pay out of pocket for required PDA expenses may decide, as I did initially, that this is a cost worth paying up to a point. If that additional cost will allow a loved one to continue enjoy participating in daily activities in an ALR social-like environment ... as opposed to a loved one having a very limited daily activity schedule in the hospital-like environment of a nursing home ... then all is well. But caregivers without the ability to pay for extra aide time should know the ALR policy in advance. Truthfully, it’s possible that upon Clare’s admission to her ALR I may have even received some heads-up information about the possible need to eventually hire private aides. If so, however, it was only a brief mention in passing.