Friday, January 16, 2015

A Caregiver's Perspective on ALR Care for People with Dementia

Some brief background
I first observed some of the early warning signs of Alzheimer’s in my wife, Clare, when she was 60 years old.  However, Clare wasn’t formally diagnosed with early or young onset Alzheimer’s until she turned 63 in the spring of 2009.  That summer, we both joined weekly support groups facilitated by social workers at the Long Island Alzheimer’s Foundation (LIAF).  Clare met with others who were in early to moderate stages of Alzheimer’s in one room, while I met with their spouses in another room.  

A dozen people attended our weekly LIAF support group meetings when I joined, but within a year or two we had as many as 16 spouses attending every week.  Of that group, only two continue to attend.  Whereas I no longer go to those weekly support group meetings, many of our original members have remained close.  In fact, quite a few of us continue to meet for lunch once a week at a restaurant that is only blocks away from where our support groups met a few years ago.  We are all there for each other and continue, in many ways, to function as a support group.

As we begin the year 2015, 11 of our original 16 members have lost our spouses.  Of the five remaining members whose spouses are still alive, one spouse receives home health care, 3 are in lockdown dementia units of Assisted Living Residences, and one is in a V.A. nursing home.  Since Alzheimer’s is a terminal disease with no means of effective treatment or cure, all Alzheimer’s spouses understand that it is only a matter of time before widowhood.

Caregiver concerns about ALRs
I am one of the spouses whose loved one lives in an ALR.  Clare is in a safe and secure environment, is happy most of the time, and receives good care.  Needless to say, our lunch group’s weekly discussions often involve “updates” on our spouses ... as well as updates on how those already widowed are getting on with their lives. 
Generally, one hears mostly good things about the care our loved ones received prior to their deaths, or are currently receiving in their residential placements. 

However, we also hear of some concerns about ALRs and the reasons for all of our complaints can easily be summarized as follows: There is a lack of sufficient training for those who work with Alzheimer’s residents, and there is insufficient oversight and supervision of these aides.

The vast majority of aides in residential placement facilities are very caring individuals with lots of patience.  The vast majority do their jobs properly day in and day out.  I am very pleased almost all of the time with the care Clare receives each day from her various aides.  But there have been occasions when aides have failed to help Clare with her Activities of Daily Living (ADLs), even though those expectations for aides are written in Clare’s Individual Service Plan (ISP).  For example, there have been days when Clare was not helped with shampooing her hair when showering, not reminded to and how to brush her teeth, not helped with application of body lotion, and not helped with getting dressed leading to Clare’s wearing the same outfit several days in a row. 

Clare’s bedroom closet is kept locked and only the aides have access.  Yet, too many times I have found Clare’s recently laundered clothing lying in a pile on the closet floor and mixed in with dirty clothing.  Too many times someone else’s blouses and pants have somehow made it into Clare’s closet and Clare has been dressed in other residents’ clothing.  (All of Clare’s clothing has her name clearly marked on a label.)  And I have found Clare dressed totally inappropriately for that day’s weather on too many occasions when I have come to visit.

In the scheme of things, I suppose one could say that all of these incidents I have described are relatively minor.  And I would agree.  There have been very few major untoward incidents, such as mix-ups with medication.  But minor incidents, or “glitches,” have continued to re-occur again and again.

ALR training and management needs
Based upon my visits with Clare in her ALR dementia unit, and after numerous meetings with various ALR directors, and after many discussions with fellow spouse caregivers who are or have been in similar situations, I feel that there are two reasons for repetitive minor glitches in an otherwise A+ facility:  Lack of sufficient ongoing staff training, and absence of supervision and ongoing staff evaluation during morning and evening hours. 

Management at Clare’s ALR sets very high expectations for dementia unit aides, and that is as it should be.  However, if management is absent, how can aides be held responsible if they do not meet these high expectations?  If ALRs do not have managers onsite in the early morning hours or in the late evenings when aides are supposed to be working closely with residents on their ADLs, how can ALR management be sure that their high expectations and standards for care are being met?  The short answer to this question is, they cannot!

Management must invest the time and money to provide supervision of aides not just during normal daytime and afternoon hours, but also during the times when aides are assisting dementia residents with their ADLs in the mornings and evenings.  Aides need to be observed and evaluated on a daily basis.  Training must be provided to aides on an ongoing basis both to review management’s standards and expectations, and to review particular issues with each individual dementia resident.  After retraining, if any aide is still not meeting high standards and expectations, that aide should be terminated.

Each time management has provided retraining to aides in Clare’s ALR, there has been a noticeable improvement in quality for a period of time.  However, whereas staff retraining focuses on general standards and expectations, staff responsible for assisting residents with ADLs must also be reminded on a regular basis of each individual resident’s particular needs.  Each resident has an ISP and I have been told that a copy of each resident’s ISP is in the office and “accessible” to all staff.  But it is unrealistic to expect aides to periodically review resident ISPs in the office during the day. 

With the possible exception of a few extremely conscientious aides, in my experience reviewing each resident’s ISP just does not happen.  I know this for a fact since there have been so many instances of my asking aides why this or that has not been done for Clare and they have told me they were unaware of this or that having to be done, or that no one ever told them to do that ... despite this or that clearly noted in Clare’s ISP “accessible” in their office.

One possible suggestion for better meeting each resident’s personal needs
In addition to maintaining a file of ISPs in the office, it would seem helpful if there would be a posting in each resident’s room of a copy of relevant pages from that resident’s ISP about assistance needed while in that room ... information about dressing, showering, hygiene, etc.  Such a posting would enable aides to quickly refresh their knowledge of each resident’s needs on a regular basis.  Aides could scan information in check-off columns on an ISP in seconds and be up to speed on the degree of assistance residents need in their rooms.  Or, perhaps, a posted index card in each resident’s bedroom could list just 2 or 3 important reminders about that resident’s ADL needs re hygiene or dressing. 

A simple file box in the dining room with one file card on each resident would also inform aides about particular dining needs of each resident.  Such cards would allow new aides or aides who don’t usually work closely with some residents to become more familiar with each resident’s specific needs.  For example, Clare is supposed to be given a grilled cheese sandwich if she won’t eat her regular meal.  But on several instances when new aides were working in the dining room, Clare had not eaten dinner when I arrived and no aide knew that the protocol was to give her a grilled cheese sandwich.  Was that information written on Clare’s ISP?  Yes.  Had any of those aides read her ISP?  No.  A file box in the dining room with just a note or two about residents might be very helpful, especially for new aides or aides filling on an emergency basis. 

More ongoing training and management oversight is needed
Absent of ongoing training and supervision, and absent of the presence of full-time management, most ALR aides will continue to do an excellent job most of the time.  But “most” of the time should not be the acceptable standard.  The only acceptable standard should be that all aides do an excellent job all of the time.  Pertinent information on each resident should be readily accessible to all aides in the areas where that information will do the most good ... in each resident’s bedroom/bathroom, and in the dining room.

But in order for excellence to be the norm, staff training and retraining must be planned and provided on an ongoing basis throughout the year.  Aides need to be periodically reminded of standard and expectations.  Aides need to be periodically reminded of personal issues with individual residents.  And aides must be observed and supervised when implementing ISPs during morning and evening hours.  All too often there is no full-time management presence when aides are supposed to be assisting residents with their ADLs in early morning and late evening hours. 

Published in Annals of Long-Term Care, Vol. 23, No.1, January, 2015.  Access online only at

Wednesday, November 26, 2014

Visiting Loved Ones with Alzheimer's in Residential Placements

A person with Alzheimer’s having difficulty with Activities of Daily Living (ADLs) places tremendous stress upon the primary caregiver.  Caring for a loved one no longer able to follow simple directions may translate into providing daily assistance with medication, bathing, getting dressed and undressed, toileting, and eating.  In addition, many caregivers endure seemingly endless hours of repetitive questioning by their loved ones and often must deal with “shadowing” and other untoward behaviors associated with Alzheimer’s such as outbursts of verbal and physical abuse.  When such conditions become too overwhelming for primary caregivers, 24/7 live-in help or residential placements outside the home are often considered.  Whereas caregivers may find minimal respite time if loved ones willingly participate in social day care programs, or by hiring part-time aides or home “companions,” many caregivers will eventually determine that it is time for their loves ones to be placed in residential facilities outside the home.

Caregivers will need to deal with many new issues once such placements begin.  Issues will vary depending upon many factors such as the quality of the placement facility, the adjustment made by loved ones to their new environment, the health of the loved one with Alzheimer’s and the caregiver, distance from the caregiver’s residence to the ALR, weather, available time, etc.  Regardless of specific issues, however, there is only one question that all caregivers ask themselves starting on placement day:  When and how often should I visit my loved one, and how long should I stay when I visit? 

The answer to this visitation question is extremely personal, laden with intense emotion, and will often cause much anxiety for many caregivers.  Social workers and others advising caregivers need to be cautious with their advice.  Placement day marks the beginning of a new phase of caregivers’ lives, not just the lives of their loved ones with Alzheimer’s.  For caregivers who had been in a loving relationship with their spouse or significant other, placement day is incredibly sad and lonely.  Despite the overwhelming stress relief once loved ones are placed, caregivers can never be fully prepared for all the emotions they will experience on that first day and in the immediate days that follow. 

Placement day forces caregivers to accept the reality that they are now and forever more living apart from their spouses or significant others.  As of that day, the caregiver and loved one are no longer living as a married couple in the same home and must truly begin living separate lives in every significant way.  Even if the decision to place was made with confidence and absence of guilt, the actual awareness of what is for all intents and purposes the end of one’s marriage is still emotionally difficult to accept.  And that is really what a residential placement is ... the end of one’s marriage in all but minor respects.  Despite the fact that the caregiver’s spouse or significant other is still alive, the caregiver becomes a functional widow or widower.  Leading separate lives and only interacting during visits, their marriage, as it had been and as they once knew it to be, is functionally over.

Acceptance is very difficult for many caregivers.  I was part of a loving marriage for nearly 50 years.  My wife, Clare, diagnosed with early or young onset Alzheimer’s disease, has been living in the dementia unit of an assisted living residential facility since September, 2013.  After a goodbye kiss and hug on the day I placed Clare, I went out to the parking lot and cried for several minutes before I could drive home.  When I got home, I cried some more.  After going back that afternoon to visit with Clare, I cried on the drive to and from the facility.  And when I got into our queen sized bed for my first evening at home without Clare lying beside me ... I cried like I had never cried before.  And even now, I still have my bouts of depression and outburst of tears.  I miss the life I had with Clare.

Assuming placement is in a caring facility providing a safe and secure environment, the facility assumes the role of primary caregiver effective on placement day.  Spouses/significant others will always remain caregivers to some degree, but they must morph from primary caregivers to resident advocates.  From placement day forward, their most important role is to ensure that their loved one is receiving proper care each day in their residential facility.
With respect to visitation, there is no handbook to consult for guidance. There is no general “rule” that social workers or eldercare facilitators can share with all caregivers.  Each caregiver will respond differently to the question of how often and when to visit, and initial responses may change over time ... should one visit on a daily basis, 4 or 5 times each week, or just a few days each week?  Should visits be brief for no more than an hour or two, or for extended periods of time?  Should visits occur during meal times so caregiver/advocates can eat with their loved ones, or after meals, or at times of ADLs?  Should visits be in the facility, or should you take your loved one to be with you in places outside of the facility?  Of course, if caregivers are still working, dependent on others for transportation, or live far away from the residential facility, there may not even be that many visitation options.

The only realistic advice to tell caregiver/advocates is to do what they think is best both for themselves and for their spouse or significant other.  Since Alzheimer’s is a progressively degenerative condition, visitation decisions will most likely change as a loved one’s condition worsens.  Will I want to visit Clare more or less often when she is in a wheelchair?  When having difficulty eating?  When in diapers and confined to her bed?  When Clare no longer knows who I am and is unable to recognize me?  Should Clare verbally or physically abuse me, will I want to continue to visit as often? 

After many dedicated years of caregiving for a loved one at home, placements force caregiver/advocates to eventually accept the need to reclaim their own lives.  Primary caregivers often find that in recent years their entire lives have been consumed by caregiving for their loved ones.  Once their loved ones are placed in a facility, primary caregivers will finally have time to do other things with their lives.  They will morph into advocates, but also they will begin to forge new lives apart from their spouse or significant other. 

For nearly a year, I visited Clare every day and took Clare out twice a week to our favorite restaurants and to get together with friends.  Initially I visited for about 2 hours each day, from 3-5 p.m., mostly during a “down time” before dinner.   However, Clare started missing me more and more after dinner and I was sometimes called and asked to return to her facility to calm her down.  After 7 months I increased my visitation time from 3-7 p.m. daily and that, along with increased medication, helped ease Clare’s anxiety a great deal.  However, an unintended consequence was that all of that time spent with Clare was causing me significant depression as my life started to be consumed again by caregiving. 

After 4 or 5 months of daily 4 hour visits I cut back my daily visit time to 90 minutes, coming to visit after dinner until her 7 p.m. activity began.  Clare was much more settled down when I left in the evenings, a “win” for her, and I had more free time for myself and did not feel as constrained, a “win” for me.  But despite reclaiming more time in my life, I still knew I needed to start making a new life for myself without Clare.  I truly enjoyed our visits ... but I also knew that I had to get on with my life.

After several months of these shortened daily visits, I began skipping days.  I joined an early evening bowling league that prevented me from coming to visit on Mondays.  When visiting only 6 days went well for several weeks, I then skipped a second day each week.  I plan to skip more daily visits in the months ahead.  It’s not that I don’t enjoy my time with Clare.  I enjoy our cuddling together on a lounge while she falls asleep in my arms.  However, I also want to free up time to visit more often with my son and family who live far away, and I want to join another early evening bowling league.  I will never stop loving Clare, but I also must make a new life just for myself.  At age 68, I must decide how I want to spend my time in my remaining years as an individual apart from Clare.  I remain married to the woman I have loved dearly for nearly 50 years, but I also accept the reality that I am already “widowed” in a very real sense.

How often should caregiver/advocates visit loved ones in a facility?  There is no one right answer.  One should visit as often and for as long as one wants to visit or needs to visit.  For one person it may mean visiting every day and for another it may not.  For one person it may mean all day visits and for another it may be visits for only an hour or two.  Each caregiver/advocate should listen carefully to advice from those who love and care about them.  But, ultimately, they must do what is right for themselves, and whatever decision they make, by definition, is the right decision.  

Published in Annals of Long-Term Care.  Vol. 22, No. 11, November 26, 2014.  Access online only at:

Tuesday, November 11, 2014

Dementia units require full-time managers

I am a retired public school principal.  Sometimes I was the first person to arrive at my school in the morning and the last one out the door at night.  I know that the various administrators at my wife’s ALR most likely arrive very early on some days and stay very late on others.  Just as was true for me, however, most of their time onsite is during daytime hours.

But when I was a principal and there was a very early morning activity involving children and teachers, such as a band rehearsal, with children and teachers arriving 90 minutes before school started, I was there.  And when there were evening functions involving children and teachers, such as a play, that may have lasted until 10 p.m., I was there.  My point is that, as the manager of my school, whenever there were children and teachers in the building, I felt that it was my responsibility to be there to observe and evaluate personnel and programs, and to be available to handle any emergencies that might occur.

I view ALR management as similar to that of a school.  Supervision and evaluation of personnel and programs/operations in their departments are the most important daily responsibilities for most, if not all, ALR administrators.  During the time that Clare has been in Reflections, there have been occasions when individual staff members have not performed their jobs satisfactorily.  In almost every instance, the unsatisfactory staff performance has been in the early morning hours before the unit director usually arrived, or in the evening hours after the unit director has usually left for the day.

Each time I have brought such instances to the attention of the Reflections unit director, or to the executive director, they have been dealt with properly.  Aides have been reminded about doing this or that properly, and some aides were probably reprimanded.  In addition, some aides have been transferred out of the unit.  However, that misses the larger issue ... the need for daily supervision of staff and programs/operations in the dementia unit beyond the normal daytime working hours.

Clare has declined to the point where she needs daily assistance to some extent with virtually all of her activities of daily living.  There have been times when Clare has been dressed in the same outfit two days in a row, dressed inappropriately for that day’s weather, has been given someone else’s clothing to wear, or has not been showered properly.  Whenever I discovered such situations during my evening visits, I needed to wait until the next day to inform the unit director because he was already gone for the day.  Then the director often had to wait at least one more day before he could even meet with the early morning aides responsible because they were gone by the time he had arrived that next day.  Sometimes the wait was several additional days because some Reflections aides work different days each week and even more days would pass before the director and aide were there at the same time. This is not how an administrator should supervise staff! 

And how does an administrator periodically formally evaluate staff that work the majority of their hours when the director is not present to personally observe their interactions with residents on a daily basis?

The same problem exists with supervision of programs and operations in Clare’s dementia unit.  I visit with Clare after she has had her dinner and take her to a lounge in another part of the ALR until 7 p.m.  I then bring Clare back to her unit, reminding her of the activity she will have between 7-8 p.m. according to the dementia unit monthly calendar.  However, too often I have discovered that the aide responsible for that program ... bingo, trivia game, sing-along, etc. ... was not leading that program and all the dementia residents were sitting in a dark room watching TV.  Once again, I cannot report that to the director until the next day ... but that is already too late because if Clare was unable to actively engage in her 7 p.m. program, the consequences were often greater anxiety.

It is very common for people with dementia to experience greater confusion and anxiety as the day progresses ... a condition so common that it has its own description, “sundowning.”  Clare has been sundowning for several years.  She usually actively engages in each of her activities, but during program transitions and “down times” she often misses me a lot and repeatedly asks aides where I am.  As the day progresses, she often grows increasingly confused and agitated, missing me even more.  When the 7 p.m. program does not take place as scheduled, Clare’s likelihood of worsening sundowning increases.  On some days I’ve received calls to please return to her ALR to calm her down.

If an administrator were present in the evening every night, the 7 p.m. programs would always take place.  If that program could not take place as planned on any given evening due to an unforeseen problem, the onsite administrator would quickly find a suitable replacement program and assign an aide to lead it so residents wouldn’t all just be sitting around watching TV.  And it is the same with daily operations.  An onsite administrator walking around in the mornings would readily observe if residents’ clean clothing is properly hung up or sitting in piles on closet floors, and easily notice other problems that could be quickly remedied.

I would expect that early morning, late afternoon and evening aides would also routinely act more responsibly if they knew that they were being supervised daily by an onsite administrator.  Most of Clare’s aides are very dedicated to helping residents, but some aides occasionally slack off knowing that there is no administrator present to observe and evaluate their behavior.  For example, on quite a few occasions I have observed several aides talking among themselves far apart from, and with backs turned to, the residents they were supposed to be supervising.  I doubt this would happen often were an onsite administrator present. 

One would think that ALR corporate management would want supervision of their dementia residents to be a top priority.  These are their residents most likely to be taking a lot of daily medication, most likely to fall or wander and injure themselves or others, and most likely to be confused and possibly try to do something that they should not attempt to do.  Dementia residents are often among the most physically and emotionally fragile ALR residents, those most in need of assistance.  To reduce the risk of accidents and untoward incidents, one would think that ALR corporate management would want their dementia units to have a full-time administrator onsite to better ensure that aides are doing their jobs properly in the early morning and evening hours.

Clare’s ALR has three shifts of aides ... 7 a.m. – 3 p.m., 3 p.m. – 11 p.m., and 11 p.m. – 7 a.m.  Hopefully, all residents are in bed and asleep from 11 p.m. until 5 a.m., so perhaps having an onsite administrator present during those 6 hours may be an unnecessary luxury.  Maybe hiring administrators to supervise dementia units 24/7 is asking too much.  But for those other 18 hours ... when residents are getting washed and dressed, receiving their meds, eating their meals, and participating in activities ... the quality of each resident’s life is largely determined by the unit aides and how well they implement daily operations.   ALR corporate management should make sure that supervisors are onsite to supervise aides working with dementia residents during each of these 18 hours.  

Published in McKnight's Long-Term Care News.  November 10, 2014, online only.  Access at:

Wednesday, October 8, 2014

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:

Wednesday, October 1, 2014

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 6th 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

Tuesday, September 23, 2014

War on Alzheimer's?

In the last 50 years our country has “declared war” on various societal and health issues such as poverty, cancer, drugs, and HIV/AIDS.  Such “wars” are often announced by the president to create a national sense of urgency, highlighting a need that our country must immediately address before things worsen and become an even more difficult crisis to resolve. 

Each of these “wars” has also been accompanied by federal funding in the billions of dollars.  The war on poverty resulted in massive funding for head start, free and reduced school lunch, and food stamps.  The war on cancer resulted in billions of dollars for research and programs for those suffering with cancer.  The war on drugs resulted in billions of dollars in funding for border patrols, anti-drug task forces, miles of border fencing, and new technology to aid in protecting our borders.  The war on HIV/AIDS resulted in billions of dollars for research, for vaccines, to promote effective means of prevention, etc.  And now, we supposedly have declared war on Alzheimer’s.  I say supposedly because, unlike previous wars on poverty, cancer, drugs, and HIV-AIDS, there has been no yearly accompaniment of billions of dollars in federal research dollars to try to win this supposed war.

With the unanimous passage of Public Law 111- 375 in 2010 that established the National Alzheimer’s Project Act (NAPA), Congress basically declared war on Alzheimer’s.  Under NAPA, the Secretary of Health and Human Services (SHHS), or the Secretary’s designee, is “responsible for the creation and maintenance of an integrated plan to overcome Alzheimer’s.”  Congress specified several specific goals and objectives, even designating the precise composition of the federal and non-federal members of NAPA’s Advisory Councils.  However, what Congress did not do was empower the Secretary of Health and Human Services to increase funding for federal research or programs for Alzheimer’s.  The Secretary’s charge under the law is to evaluate current programs, establish priorities, and to make annual recommendations.  Nowhere in the law is there authorization for increased funding beyond current levels.  1. 

So we have a “war” against Alzheimer’s with no more funding for research, programs and services than we had before this supposed war was declared.  Our National Institutes of Health (NIH) allocated $457 million to Alzheimer’s in Fiscal Year 2009, $450 million in 2010, $448 million in 2011, $503 million in 2012, and an estimated $484 million in 2013.  This can be contrasted with more than $3 billion of NIH funding for HIV/AIDS research during each of these same 5 years, and more than $8 billion each year for cancer research.  2.  And even these funding levels pale in comparison to the money spent on our wars on poverty and drugs, which are in the many multibillions of dollars each year.  (As but one example, federal spending for “drug control” will exceed $25 billion this year.)  3.

HIV-AIDS is now a disease that can be successfully treated and prevented, a disease not even ranked among the top 15 causes of death in this country since 1997.  However, HIV-AIDS continues to receive six times the research dollars given to Alzheimer’s, the 6th leading cause of death in this country, and the only one among the top ten causes of death with no effective means of prevention, treatment, or cure. 4.

Yet funding for HIV-AIDS research continues to increase while funding for Alzheimer’s remains flat.  Where is this supposed “war” on Alzheimer’s?  The death rate from HIV-AIDS has fallen 42% in the past decade.  The death rate for Alzheimer’s has risen 68% in the same time period.  Where’s the “war” on Alzheimer’s?  Alzheimer’s, already the most expensive medical condition in this country, costs Medicare and Medicaid about $200 million each year.  As expensive as this sounds, costs are expected to grow to more than $1.2 trillion by 2050 when the number of people with Alzheimer’s in this country grows from more than 5 million to 14 million people.  5.  So where is this “war” on Alzheimer’s?

In 2013, the Senate proposed, with President Obama’s support, an additional $100 million for NIH funding for Alzheimer’s research.  However, the House never acted upon this proposal.  In his proposed 2014 federal budget, President Obama allocated an additional $100 million for Alzheimer’s.  But even should congress vote to support an additional $100 million for Alzheimer’s research and programs, money most certainly needed,  this amounts to just a drop in the bucket.  Everyone recognizes we must fight a war against Alzheimer’s, but we are spending money as if we are fighting a backyard skirmish.  $100 million more for Alzheimer’s research and programs is simply not enough.

Senator Tom Coburn (R-OK) issues an annual “Wastebook” each year citing examples, in his opinion, of low priority and wasteful government spending. 
The 2012 and 2013 Wastebooks list expenditures by NIH that Sen. Coburn finds wasteful or of low priority in the past 2 years.  NIH allocated $295,384 to determine if male fruit flies are attracted more to male or female fruit flies, $350,000 to learn how golfers use their imagination to perform better, $548,731 acquiring evidence about how heavy drinking in one’s thirties can have a different effect on feelings of immaturity than heavy drinking in one’s twenties, and $666,905 to learn how fictional characters in the media can make someone feel better about life.  One NIH funded project costing $325,525, ”Emotional Regulation Predicts Marital Satisfaction,” concluded that if wives calmed down faster during arguments with husbands, they would find their marriages more satisfying.  NIH also granted $702,558 to study “the impact of televisions and gas generators in Vietnam.”  6.

If our nation is fighting a “war” on Alzheimer’s, and NIH finds itself with an extra $3 million to spend on research grants, wouldn’t that money be better spent on Alzheimer’s disease research, programs, and services?  Apparently NIH considers money spent studying fruit flies, golfers’ performance, the relationship between drinking and maturity, media characters, and TV/generator usage in Vietnam a more important and higher priority than funding Alzheimer’s research.  I would argue that NIH priorities must be closely re-examined. 

Where is our national commitment to truly wage war against Alzheimer’s?  A closer examination of this year’s federal budget is a perfect example of the disconnect between the impressive rhetoric about the need to increase funding for Alzheimer’s, and proposed federal spending to act upon that need.  First, the rhetoric.  In his “Vision Statement” for the 2013 NAPA Update, President Obama concluded his statement by saying that, “it is essential that we confront the challenge it [Alzheimer’s] poses to our public health.”  7.  And in the “Advancing the Health, Safety, and Well Being of the Nation” section of the 2014 federal budget, under the subheading of “Alzheimer’s Disease Initiatives,” there is this rhetoric:  “In FY2014, the Budget includes a $100 million budget initiative targeted to expanding research, education, and outreach on Alzheimer’s disease, and to improving patient, family, and caregiver support.”  8.  In a $3.8 trillion budget, $100 million is the total amount of new money that the president proposes to spend to confront the challenge Alzheimer’s poses to public health.

However, in that same section of the 2014 federal budget touting this increase of $100 million for Alzheimer’s, one can find on the previous page a subheading, “Ryan White.”  There one learns that “The Budget includes $2.4 billion for the Ryan White HIV/AIDS program to continue its critical role in support of patients across the HIV/AIDS continuum, by linking patients to care, prescribing and improving adherence to antiretroviral medicine, and achieving viral suppression.”  9.
Included in that Ryan White allocation is $943 million for providing “life-saving and life- extending medications to 218,900 individuals.”  Just this amount alone for medications is nearly 70% more than the entire NIH allocation for Alzheimer’s, a disease for which there are no current life-saving or life-extending medications. 

For 2014, NIH estimates spending $3.122 billion for HIV/AIDS ... a disease for which there are already effective methods of prevention and treatment, a disease not among the top killers in this country, and a disease with a rapidly falling death rate. 

For 2014, NIH estimates spending $562 million for Alzheimer’s ... a disease for which there is no effective means of prevention, treatment or cure, a disease that is the 6th leading cause of death in this country, a disease with a rapidly rising death rate, and the most expensive disease to treat.

CDC reports data on deaths and mortality each year.  Their latest data are for the year 2010.  In that year, an estimated 1.1 million people were living in the U.S. with a diagnosis of AIDS, and the estimated number of people who died with an AIDS diagnosis in the United States was 15,529.”  10.  In 2010, however, it is estimated that 5.2 million people were living in the U.S. with Alzheimer’s, and the estimated number of people who died with an Alzheimer’s diagnosis was 83,494.  And the number of Alzheimer’s deaths may actually be much higher.   According to a recent study by the Rush Alzheimer’s Disease Center in Chicago, Alzheimer’s may actually be the 3rd leading cause of death in this country, not the 6th, taking as many lives as heart disease and cancer.  “Alzheimer’s disease and other dementias are under-reported on death certificates and medical records.  Death certificates often list the immediate cause of deaths, such as pneumonia, rather than listing Alzheimer’s as the underlying cause.”  Epidemiologist Brian James, chief study author, said that more than 500,000 people over the age of 75 may have died of Alzheimer’s in 2010, a number that is six times higher than the most recent CDC estimate.  11.

In the 2014 federal budget, spending priorities of The Department of Health and Human Services consumes 9 pages.  The first two pages is a listing of “Funding Highlights,” followed by 7 pages of bold print subtopics giving more information about Department priorities.  One will find mention of HIV/AIDS in both sections.  One will find no mention of Alzheimer’s in either section. 12.

War on Alzheimer’s?  Apparently, not yet.

1.  111th Congress, Public Law 375.  National Alzheimer’s Project Act.  U.S. Government Printing office, p. 124, STAT. 4100-4103.  Available at:
Accessed January 14, 2014.

2.  Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC).  U.S. Department of Health and Human Services, NIH Research Portfolio Online Report Tools (online).  Available at:  Accessed January 14, 2014.

3.  FY2014 Federal Drug Control Budget.  Get The Facts, DrugWars  Available at:  Accessed January 14, 2014.

4.  National Vital Statistics Reports, Vol. 62, No. 6, December 20, 2013, p. 9.  Centers for Disease Control and Prevention.  Available at:  Accessed January 14, 2014.

5.  Alzheimer’s association 2013 Alzheimer’s Disease Facts and Figures.  Alzheimer’s Association (online).  Available at:  Accessed January 14, 2013.

6.  Wastebook No. 3, November 2012 and Wastebook No. 4, December 2013.
Accessed, January 14, 2014

7.  National Plan to Address Alzheimer’s Disease: 2013 Update, p.2.  Available at:
www.aspe.hhs/gov/daltcp/napa/NatlPlan2013.shtml.  Accessed, January 14, 2014.

8.  Fiscal Year 2014 Budget in Brief.  Strengthening Health and Opportunity for All Americans.   U.S. Department of Health and Human Services, HHS.GOV, p. 5. Available at:  Accessed, January 14, 2014.

9.  Fiscal Year 2014 Budget in Brief.  Strengthening Health and Opportunity for All Americans.   U.S. Department of Health and Human Services, HHS.GOV, p. 4. Available at:  Accessed, January 14, 2014.

10.  HIV in the United States: At A Glance.  Centers for Disease Control.
Available at:  Accessed, January 14, 2014.

11.  Alzheimer’s may kill as many people as heart disease, cancer: Study.  Available at: heart-disease-cancer-study/.  Accessed, March 6, 2014.

12.  Budget of the United States Government, Fiscal Year 2014.  Department of Health and Human Services, pp. 93-101.  Available at:

Published in Journal of the American Geriatrics Society, September, 2014, Vol. 62, No. 9, pp. 1819-1820.  Access at:

Thursday, September 11, 2014

New York Can be Our Center for Alzheimer's Research


More than 5 million people in this country have Alzheimer’s disease, and more than 300,000 of those with Alzheimer’s live in New York.   By 2025, it is estimated that there will be 350,000 residents living with Alzheimer’s in New York. 1.  Congressman Steve Israel and New York Assemblyman Charles Lavine issued a joint proposal in June, 2013 suggesting that New York should become this country’s center for Alzheimer’s research.  Noting that caring for people with Alzheimer’s is already costing this nation more than $200 billion a year ... costs expected to exceed $1 trillion by 2050 ... and further noting that New York is home to some of the finest universities, health centers, and research facilities in the nation ... Israel and Lavine have proposed a state bonding initiative to secure sufficient funding to tackle this disease.  Their bond proposal would provide a dedicated funding stream to support research to find effective means to treat, cure, and eventually prevent Alzheimer’s, as well as consider new programs to help people with Alzheimer’s and their caregivers.  According to Israel and Lavine, “Today’s investment in Alzheimer’s research could save millions of lives and billions of dollars for the nation’s public health programs, as well as create jobs.” 2.

New York ... this nation’s center for Alzheimer’s research?  Shouldn’t we depend on the federal government to take the lead in such research?  Unfortunately, we cannot depend on the National Institutes of Health (NIH) to take the lead in such research given their track record.  Alzheimer’s research continues to be underfunded and of a relatively low priority when compared to NIH funding for other diseases.  For example, in 2013-2014, NIH estimates it will spend about $1 billion on Alzheimer’s research, $6 billion on HIV/AIDS research (and $12 billion on cancer research). 3.  Recent and projected NIH funding for Alzheimer’s will simply not be enough to meet the expectation of finding effective means of prevention or treatment, let alone a cure, in the near future. 

It is hard for a caregiver like me to make sense of this NIH funding imbalance.  For example, HIV/AIDS has not been among the top 15 causes of death in this country since 1997 whereas Alzheimer’s is the 6th leading cause of death in this country. 4.  From 2000-2010, deaths due to HIV/AIDS decreased 42%, but during this same period deaths due to Alzheimer’s increased 68%. 5.  Alzheimer’s is now the only disease among the top causes of death with no means of prevention, treatment, or cure. 6.  And yet, HIV/AIDS research will receive $6 for every $1 going for Alzheimer’s research.

So what do Congressman Israel and Assemblyman Lavine propose be done to come up with more funding Alzheimer’s research?  Obviously, they would both like to see increased federal funding, but they also know that we cannot count on that happening, especially now with federal sequestration budget limits in place.  Their solution is a state bonding initiative, one similar to those that have made California this nation’s center for stem cell research, and Texas this nation’s center for cancer research. 

The 2004 California initiative, known as Proposition 71, provided for $3 billion in state general obligation bonds to fund stem cell research “and provide funding, through grants and loans, for such research and research facilities.”  7.  The 2007 Texas bond issue, known as Proposition 15, was also for $3 billion in general obligation bonds to finance research grants with the hope of finding cures, treatments, and preventative measures for cancer. 8.  Both bonding initiatives hold the promise of attracting the best researchers in those fields to come to their states to conduct their research. 

New York already has in place some of the major “ingredients” to make an Alzheimer’s bond initiative a success.  Major research universities are based in New York, including 3 of our nation’s 29 Alzheimer’s Disease Research Centers ... at Columbia University, NYU, and the Mount Sinai School of Medicine. 9.  New York also has some of the finest research facilities in the nation, such as Long Island’s Cold Spring Harbor Laboratory, one of the world’s leading centers for genetic and neuroscience research.  One can only imagine the synergy of having these world class institutions working on cooperative grants and projects with sufficient funding to attract even more world class researchers and scientists to find ways to prevent, treat, and cure Alzheimer’s. 

Both the California and Texas models also involved “ordinary” citizens in committee leadership roles so their voices could be heard.  With Alzheimer’s, too often doctors and researchers ignore caregivers’ observations about diagnosis and treatment, and their voices are not heard.  The Advisory Committee for the National Alzheimer’s Project Act, NAPA, signed into law in 2011 to set national priorities for Alzheimer’s research and programs, has only one member who is a full-time 24/7 caregiver. 10.  More caregiver voices need to be heard when it comes to setting funding priorities to help those with Alzheimer’s and their caregivers.  A state bond issue could make sure that Alzheimer’s caregivers’ voices are heard.

We must invest in research to find methods of effective prevention and treatment, as well as a cure.  But we also must invest in more effective programs to help those already dealing with Alzheimer’s.  A New York research model that involved caregivers to help set funding priorities would hear suggestions that too often do not reach those setting funding priorities.  Caregivers would suggest the need for grants to local non-profit organizations such as LIAF, the Long Island Alzheimer’s Foundation, to enable them to provide more support groups for people with Alzheimer’s and their caregivers, and more social day care model programs for those with early to moderate stage Alzheimer’s.  Caregivers could explain why ongoing training is needed for those who work each day with Alzheimer’s residents in assisted living facilities and nursing homes.   Caregivers could offer many helpful suggestions for new program initiatives if given an opportunity to have their voices heard at the state level.

For caregivers already dealing with loved ones experiencing moderate to severe Alzheimer’s, helpful discoveries through such research may come too late.  Therefore, in addition to funding research on prevention, treatment, and a cure for Alzheimer’s, we must also provide funding for more effective programs to support those already dealing with Alzheimer’s right now. 

Hopefully, Congressman Israel and Assemblyman Lavine can make their proposal become a reality.  A $3 billion bond issue, spread out over 20-30 years, can make New York our nation’s center for Alzheimer’s research and innovation.  A bond issue could create new jobs and over time save the state money that otherwise would have been spent on Medicaid costs to care for New Yorkers with Alzheimer’s.  And discoveries through research would benefit all people with Alzheimer’s wherever they live.

New York ... our nation’s center for Alzheimer’s research?   It’s a big idea for a big state.  It’s an idea whose time has come.

1.  2013 Alzheimer’s Disease Facts and Figures, p. 22.  Alzheimer’s Association.  Available at:   Accessed on November 26, 2013.
2.  Pols call for statewide Alzheimer’s effort.  Newsday, June 17, 2013.  Available at:  Accessed on November 26, 2013.

3. Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC).  U.S. Department of Health & Human Services, NIH Research Portfolio Online Report Tools.  Available at:  Accessed on November 26, 2013. 

4. National Vital Statistics Report, Vol. 61, No. 6, October 10, 2012.  Centers for Disease Control and Prevention.    Available at:  Accessed on November 26, 2013. 

5.  Alzheimer’s Association 2013 Alzheimer’s Disease Facts and Figures.  Available at:  Accessed on November 26, 2013.

6.  Alzheimer’s Facts and Figures.  Alzheimer’s Association.  Available at:  Accessed on November 26, 2013.

7.  Proposition 71, Stem Cell Research.  Funding.  Bonds. – California State Government.  Available at:  Accessed on November 26, 2013.

8. Cancer Research Initiative.  Available at: www.governor.state.tx.usd/priorities/families/healthier_citizens/cancer_research_initiative.  Accessed on November 26, 2013.

9. Alzheimer’s Disease Research Centers.  National Institute on Aging.  Available at:  Accessed on November 26, 2013.

10.  National Alzheimer’s Project Act.  U.S. Department of Health & Human Services.  Available at:  Accessed on November 26, 2013.

Published in American Journal of Alzheimer's Disease & Other Dementias. September, 2014,  Vol. 29, No. 6, pp. 489-491.  Access at: