Breaking Free From the Caregiver Prison: Can Assisted Living Social Workers Help?

(Originally submitted title ... Can Social Workers Help Caregivers Avoid Returning to “Caregiver Prison?")

People with Alzheimer’s in need of 24/7 care and supervision are often placed in assisted living or nursing home facilities when caregivers can no longer provide the care they need at home.  My wife, Clare, has Alzheimer’s, and after being her 24/7 caregiver for several years, when social day care programs no longer provided me enough respite time I had to place Clare in the dementia unit of an assisted living residence facility (ALR).  She has now been living apart from me for more than a year. 

Initial benefits to me as a caregiver

For the first six months after placement, I came to visit Clare daily from 3-5 p.m., brought Clare to her dining room for dinner, and I went home.  Sometimes I signed out Clare much earlier in the day to take her for dinner and/or to enjoy recreational activities.  Whenever I took Clare out, I’d always have her back in time for her 7 p.m. activity.  After those first six months, however, Clare grew increasingly anxious from the time dinner ended until her next activity began at 7 p.m., and she sometimes remained anxious throughout the rest of the evening.  Clare was missing me a lot and asking when I was coming to visit, forgetting that I had just been there hours earlier.  I was receiving evening calls at home from ALR aides asking for my help.  Clare would get on the phone very upset and I would calm her down, or return to the facility to calm her down in person. 

The ALR social worker said that Clare was increasingly requiring individualized attention from aides at these times, but the facility was not staffed sufficiently to allow one of their aides to spend time exclusively with one resident on a regular basis.  The social worker suggested that we try an experiment ... I would either hire an aide or stay with Clare myself between 5:45-7 p.m. when Clare was most anxious.  The hope was that if Clare was not anxious heading into her 7 p.m. activity, she might remain calm throughout the evening.  Clare’s happiness was and remains my number one priority, so I told the social worker that I would continue visiting from 3-5 p.m. and bring Clare to dinner as I had been doing, but then I would stay and eat a “bag supper” in an adjacent room so I could be with Clare again from the time she finished dinner until 7 p.m.  The experiment worked and Clare’s anxiety in the evenings disappeared, just as we had hoped.  But there was an unintended consequence for me.

Unintended consequence ... “caregiver prison”

After visiting from 3-7 p.m. for four months, I realized that I had re-entered “caregiver prison.”  There’s no other way to describe it.  I felt trapped.  Adding in a half hour on each end of my visit for travel, etc., my daily visits now took at least five hours out of my day, seven days a week.  I started resenting those 5 hours I was giving up each day.  I also was tired of eating a “bag supper” of PB&J sandwiches and/or “fast food” each evening.  I was usually eating a “real” supper later on that evening, and I had gained 15 pounds during those 4 months.  I wasn’t sleeping well, and I was mentally, physically, and emotionally exhausted each day.  Some of my closest family members and friends suggested that I wean myself away from those four hour daily visits, but I resisted ... until I realized that I had unintentionally re-entered “caregiver prison.”

This was not the first time I had been in caregiver prison.  For several months prior to her ALR placement, Clare was with me every minute of every day except for the 20 hours each week that she spent in social day care programs.  Unable to leave Clare alone unsupervised and with her unwillingness to accept a companion or health aide in our home, I felt like a prisoner.  Wherever I was, she was.  The lessening of stress was palpable once Clare was placed in her ALR.  I had my freedom back.  I had my privacy back.  But I let myself get lulled into forfeiting that freedom and privacy six months later by agreeing to increase my daily visit time from 2 to 4 hours.  

I made the decision to try another experiment.  I decided not to arrive anymore at 3 p.m., unless I was taking Clare out that afternoon.  Instead, I would not arrive until Clare finished her dinner, hoping that she would not even realize that I was arriving later than before.  I would then visit with her until the 7 p.m. activity began. 

My experiment worked.  Clare was enjoying spending that 3-5 p.m. time slot in activities with her group, totally enjoying her time with me after dinner, and hardly missing me at all after I left each evening at 7 p.m.  This new experiment was a win-win ... Clare was enjoying her evening activities without daily anxiety, and I was no longer feeling as if I were in caregiver prison.  

I cannot fault the ALR social worker for not suggesting this modification earlier.  To her credit, the social worker did speak with me several times to review how things were going, and each time I said that all was well.  I never once shared that whereas the experiment seemed to be working wonderfully for reducing Clare’s daily anxiety, it was increasing my daily stress and anxiety.  The ALR social worker had no way of knowing how physically, mentally, and emotionally drained I was each evening.  She had no idea of how poorly I was sleeping and eating. 

Had the ALR social worker known about these unintended consequences, I am confident that she would have intervened earlier to suggest a modification to that first experiment.  In fact, the same week I decided to cut back and notified the social worker to that effect, I was told that she was going to actually suggest a similar cutback in hours to me.

Can institutional social workers help prevent caregiver prison?

Is there a way for social workers in institutional settings to be more alert to possible unintended consequences to caregivers of their residents?  Should social workers consider ways to elicit personal information from former caregivers of their dementia residents when major changes are made in routines?  Social workers in institutional settings cannot possibly establish close personal relationships with caregivers that develop naturally in other settings, such as in weekly support groups.  If I had still been attending weekly meetings in a spouse support group, I would have shared personal information about the negative effects those longer visits were having on my health and stress level.  I am sure that the support group social worker would have suggested that it was time to modify that experiment. 

In a caregiver support group, caregiver needs are the main focus of the social worker.  But in an institutional setting for people with Alzheimer’s, the social worker’s focus is on the needs of the resident with Alzheimer’s.  And that is how it should be.  But, perhaps, some brief questionnaire or other process can elicit helpful personal information to evaluate effects on caregivers when there are major changes made with resident-caregiver interactions.  Of course, any such questionnaire or process is still dependent upon the caregiver feeling comfortable enough to share such personal information.  Had I been asked if the additional daily visit hours were causing me greater anxiety, or causing disruptions in sleeping or eating patterns, I might have volunteered that information.  Or, truthfully, I may not have been honest enough to share that information. 

But this might be a matter worthy of further consideration.  A case can be made that ALR social workers already have enough on their plate dealing with their caseloads of dementia residents and regular residents without adding more time-consuming responsibilities dealing with the former full-time caregivers of their dementia residents.  However, if social workers can come up with a process that can elicit helpful information and does not require too much additional time, that could help social workers prevent some former caregivers from returning to caregiver prison. 

Published in Annals of Long Term Care, Vol. 22, no. 10, October, 2014 online only.  Access at:  www.annalsoflongtermcare.com/article/breaking-free-caregiver-prison-can-assisted-living-social-workers-help.

3 Steps To Fight Alzheimer's

Note:  The Alzheimer’s Solutions Summit, an intergovernmental hearing, was held on July 1, 2014 at the Long Island Alzheimer’s Foundation.  The hearing was initiated and chaired by Congressman Steve Israel (D-NY), co-hosted with State Senator Jack Martins (R-NY) and Assemblyman Charles Lavine (D-NY).  I was invited by Congressman Israel to testify as part of a caregiver panel.  In my allotted 5 minutes I discussed three major issues from my caregiver’s perspective.  Following that hearing, I submitted my remarks for consideration as a blog posting on the website of USAgainstAlzheimer’s, a 501(c)(4) organization engaging in public advocacy, federal relations, grassroots activity, and voter education.

First, our federal government must re-prioritize its spending to make a stronger commitment to fund Alzheimer’s research.  4 years ago, Congress declared War on Alzheimer’s with the creation of NAPA, the National Alzheimer’s Project Act.  But, unfortunately, Congress never authorized any additional money for Alzheimer’s research when it created NAPA.  Since we declared War on HIV/AIDS about 25 years ago, our federal government has spent billions of dollars to fight this disease, leading to effective means of prevention and treatment.  The death rate from HIV/AIDS fell 42% this past decade and it has not been listed among the top 15 causes of death in this country since 1997.  Contrast that with Alzheimer’s, the 6^th leading cause of death in this country, with no effective means of prevention or treatment.  The death rate from Alzheimer’s rose 68% this past decade.  Yet, during each of the past 5 years our National Institutes of Health have continued to fund more than $3 billion on HIV/AIDS research compared to only about $500 million on Alzheimer’s research. 

President Obama’s 2014 Budget contains an additional $2.4 billion for HIV/AIDS, but only $100 million more for Alzheimer’s.  So, where is this supposed War on Alzheimer’s?  We must re-prioritize our federal spending if we truly want to end Alzheimer’s.  We should also support the state bond initiative promoted by Congressman Israel and Assemblyman Lavine to make New York our country’s center for Alzheimer’s research.

Second, we must reform medical practice. Doctors must pay more attention to caregivers during office visits.  Too many caregivers report that their earliest observations of possible Alzheimer’s symptoms in their loved ones were ignored by doctors.  I propose that doctors administer the AD8 questionnaire to all caregivers expressing such concerns.  It only takes 2 - 3 minutes, and research already supports the AD8 as being more effective to screen for early signs of Alzheimer’s than the widely used patient test, the Mini-Mental State Examination, or MMSE.  If the AD8 validates caregiver concerns, doctors should do a complete neuropsychological evaluation of the patient ... even if they don’t personally observe Alzheimer’s symptoms and even if MMSE scores don’t indicate any problems.  

When issuing an Alzheimer’s diagnosis, doctors should also inform patients and caregivers about support groups and helpful social day care programs.  Doctors should also provide a handout explaining the progression of Alzheimer’s over time, with a strong recommendation to meet with an eldercare attorney and financial advisor to properly prepare for the future, making sure that all end-of-life documents are in order ... will, trust, living will, health care proxy, durable power of attorney.  We hear too often in support groups ... “I wish someone had told me about this earlier so I could have been better prepared.”

Doctors also need to be more direct with patients and caregivers about the limited effectiveness of medications.  There is absolutely no clinical trial evidence indicating that current FDA-approved Alzheimer’s medications are effective beyond one year ... if they have any benefit at all.  Not even Big Pharma claims their meds are effective beyond a year, if effective at all.  Yet many doctors prescribe these meds year after year, resulting in caregivers spending thousands of dollars on what I refer to as “expensive bottles of hope.”  This money could be much better spent by caregivers on day care programs, aides, or other services.

Third, we must find ways to reduce the high cost for Alzheimer’s care.  Unless one is wealthy enough to self-pay, poor enough to qualify for Medicaid, or has a good long term health care policy ... costs for Alzheimer’s care can completely drain retirement savings and drastically change the surviving caregiver’s future.  Monthly costs for day care programs and home health care aides can easily run $2-3000 each month.  For 24/7 aides, costs can double or triple.  Assisted living for Alzheimer’s residents can cost $6-7000 each month, and if a private aide is also needed, monthly costs can easily double.  Basic nursing home costs often start at around $12-15000 per month for Alzheimer’s patients.  These costs are prohibitive for most middle class Long Islanders. 

We should consider tax credits or subsidies to non-profits so they can provide more support groups and affordable day care programs.  We should consider tax credits or subsidies to assisted living and nursing home facilities so they can provide more staff training and programs for residents.  And we should consider tax credits or subsidies, along with changes in current Medicare and Medicaid legislation, to provide caregivers with some cost relief. 

It won’t be easy, but somehow we must find ways to lower the high cost of caring for a loved one with Alzheimer’s.   

Published as a guest blog on the “by2020” site of USAGainstAlzheimer’s, October 1, 2014.   Access online only at www.usagainstalzheimers.org/blog/3-steps-fight-alzheimers.