Wednesday, July 16, 2014

Secrets to satisfied family members that providers should know

(Title as originally submitted:  "Assisted Living Residences and Family Caregivers.")

Choosing an ALR
In September, 2013, I placed my wife, Clare, in the dementia unit of an Assisted Living Residence (ALR).  My main goal was twofold: I wanted Clare to be happy, and I wanted her to be in a safe and secure environment. 

Prior to placement I did my “due diligence” by researching and visiting numerous facilities.  I wanted Clare, who has Alzheimer’s disease (AD), placed in a facility that I could rate as “A+” in terms of the caring and services provided.  I also wanted Clare in a facility where she could “age in place.”  In New York, all ALRs are licensed to provide “basic services” but fewer than 20% of ALRs also have special state certification to provide a higher level of care.  ALRs with “enhanced” or “special needs” certification require all aides to receive specialized training in how to work with dementia residents and these ALRs can provide a wider range of services for loved ones with dementia.  For example, only ALRs with this advanced certification can serve residents who are wheelchair bound, totally incontinent, or in need a very high level of individual care with their activities of daily living. 

There were many reasons for choosing this particular ALR for Clare.  During two pre-placement tours I observed a very caring staff interacting positively with residents.  I also observed solid safety and security measures, and I noticed a full and varied daily activity schedule.  The general ambience of the facility also impressed me as a bright and cheerful facility with lots of natural lighting and many amenities for both residents and visitors.  And, it was very clean. 

Truthfully, Clare’s ALR seems more like a nice hotel than an assisted living facility.  Its many “amenities” make the time we spend together each day very enjoyable.  Among those amenities are a “bistro” open 24 hours every day where Clare and I can enjoy free coffee, juice, fresh fruit, and various snacks whenever I visit.  There are also several lounges with large TV sets where we can sit in relative privacy to talk or watch television together.  And when I visit while Clare and members of her unit are watching a movie in their dedicated cinema room with movie theatre style fixed seating, I often join her ... after first stopping off at the free popcorn machine in the rear of the room! 

Since day one, Clare’s ALR has impressed me with its varied program of daily activities.  Clare enjoys and is happily engaged in these activities each day, along with enjoying the many special entertainers and programs brought in each month.  Members in Clare’s dementia unit also participate in a variety of monthly “field trips” ranging from museums and productions of musicals at local community theatres, to picnics at parks and at the beach.

Handling “glitches” that arise
Fast forward almost a year and I can say that Clare is now living in an “A+” facility.  However, I could not say that during her first 6 months ... there were simply too many “glitches” not satisfactorily resolved, and too many emails and phone calls to ALR administrators that did not receive responses in a timely manner.  Issues that I thought were resolved continued to resurface.  I could readily observe almost all staff members doing an A+ job each day, so I still felt that Clare was in an “A” rated facility.  However, all it takes is a few staff members giving less than their best to make any institution suffer.  In my opinion, those few staff members needed to be more closely supervised and, if still not “on message” and not living up to what should always be very high standards and expectations, such staff members should have been terminated. 

In my situation, once I went to the executive director with concerns about various glitches that continued to resurface, the director acted promptly to deal with each situation.  Operational procedures were changed in some areas, and performance expectations were reviewed with each staff member.  New staff members were hired to remedy some situations, and some staff members were shifted to different areas of responsibility.  

ALR administrators who want to establish and maintain positive relationships with family caregivers of dementia residents must remain attentive to family caregiver concerns.  I was lucky ... top administration at Clare’s ALR wanted to hear my concerns and took very effective action to eliminate problems.  To this day, anytime I have a concern I now speak with or email the executive director and receive immediate acknowledgment of my email.  Action is then taken immediately or an explanation is provided for why action cannot be taken.  The door to the top executive is always open to me.  I appreciate that enormously, and administration has truly gone “above and beyond” to try to make Clare’s life as happy as possible ... and to make my life easier as her caregiver/advocate.

Suggestions for facility managers
Institutional caregivers in an ALR setting must promote recognition of a “we” relationship with family caregivers.  Upon ALR placement, family caregivers relinquish their roles as primary caregivers and entrust that role to ALR staff.  As institutional caregivers, however, ALR staff must always remember that some family caregivers may want to remain actively involved with their loved one’s care. 
Following are five suggestions for ALR managers to help promote that “we” relationship.

1.   Inform would-be family caregivers and residents about your certification.  If your facility is able to offer enhanced care to dementia residents, place that fact prominently on your website and promote that fact during your meetings with prospective residents and their caregivers.  Explain what your facility can provide that other nearby facilities may be unable to provide.  When doing my initial search of facilities, I was totally unaware of the differences in certification and that turned out to be the most critical point of information.  And, just as important, take the necessary time to explain exactly what services and levels of care such certification does or does not allow you to provide.  Family caregivers should have this information prior to placement to avoid misunderstandings after placement.

2.  Communicate effectively with family caregivers.   Anytime there are changes in a resident’s daily routines, or anytime there are significant health or behavioral declines, family caregivers should be informed.  This is another way to promote that “we” relationship.  For example, family caregivers should be notified anytime there is a significant change in a resident’s sleeping or eating pattern.  One relatively easy way for managers to communicate effectively with family caregivers when such changes develop is to do something similar to what many teachers do for parents.  Teachers often send home weekly check-off sheets for children who have behavioral or work habit issues.  The days of the week are listed in one column, with a few columns next to each day for placing a check mark to indicate good, fair, poor, etc.  There may also be space for comments.  In a very few seconds, teachers can communicate effectively with parents who can then follow up if more information is requested.  Facility managers should have similar simple check-off forms available for resident caregivers who want to be kept informed when their loved one is having issues with sleep, food, behavior, etc.

Family caregivers should also be informed anytime there are significant changes in personnel working with residents.  New aides have been hired periodically and I see new faces in Clare’s dementia unit, but family caregivers were never given a list of their names.  Institutional caregivers must understand that family caregivers may want such information.  I certainly want to at least know the names of people responsible for my wife’s care on a daily basis.  Not sharing such information can result in unnecessary stress and anxiety for family caregivers, as well as disappointment by this lack of communication.  I want to know the names of people interacting with my wife.

The institutional goal should be preemptive communication.  Should there be a glitch, inform the family caregiver immediately ... don’t wait for the caregiver to raise that issue with you or your staff.  Should there be a significant program or staffing change, inform the family caregiver.  Should there be significant changes in resident behavior or health, inform the family caregiver.  Institutional caregivers should provide such information routinely and in a timely manner.

3.  Hold informal get-togethers with family caregivers.  Provide coffee and cookies and invite all family caregivers to meet with you as a group, and possibly even with your top administrative staff, a few times each year.  These do not have to be lengthy meetings.  Informal settings will allow you to inform family caregivers about any significant changes that are coming or have recently been implemented.  Managers can address anticipated concerns, highlight institutional or staff accomplishments, and receive valuable feedback that might not otherwise be shared with you.  Such informal meetings may even result in suggestions from family caregivers that can help you improve your facility’s services to residents and/or family caregivers. 

Informal meetings can also encourage another important aspect of that “we” relationship just by providing a time for family caregivers to meet each other.   Some but not all family caregivers probably are or were in support groups.  Family caregiver meetings with administrators may provide an opportunity for family caregivers to get to know each other and learn from each other ... perhaps even leading to an ad hoc support group of their own.  Meetings would also enable family caregivers to speak with each other and learn from each other about important ALR-related issues they are facing ... what services other caregivers are using to hire private aides, how they are resolving medication issues, if anyone can recommend a neurologist or geriatric psychiatrist, etc.

4.  Issue a handbook or informative monthly newsletter.  Whereas facilities often provide promotional material and monthly calendars of events and daily activities, few ALRs provide family caregivers with any written material explaining basic procedures, names of staff members, and phone numbers or email addresses for administrative staff.  A list of the names of aides that work with that caregiver’s loved one should also be provided.  Most ALRS provide name badges for all personnel, but badges often have names written in such small lettering that one would have to violate an aide’s “personal space” to get close enough to read their names.  Often aides do not wear their badges or they are covered up by other articles of clothing.  A list of their names would be very helpful for family caregivers to know who is working with their loved ones and how to reach various supervisors by phone or email.

A handbook should also contain explanations of the care your facility can provide, following up on information presented prior to admission.  I never received any information about the individual assistance I should expect for Clare, and this has led to several mismatches of expectations.   I had expected a higher level of personal care and attention since Clare’s ALR has advanced certification for providing care to loved ones with Alzheimer’s.  But I had to be told several times that some of the care I was expecting cannot be provided due to insufficient training of personnel ... that such care could only be provided in a nursing home setting and not in an ALR. 

An alternative to a handbook would be a monthly newsletter with periodic reminders of such care standards, along with a list of staff and how to reach supervisors.  This information would go a long way towards helping to forge that “we” relationship between institutional and family caregivers.

5.  Examine your facility from a family caregiver’s perspective.  Instruct your administrators to try to place themselves in the shoes of your family caregivers.  Are family caregivers coming to visit residents in locked units having to wait for several minutes until an aide unlocks the door?  If so, would providing remote openers allow aides to unlock doors more quickly?  Is the music volume on your hall speakers so loud in some areas that it disturbs family caregivers meeting with their loved ones in various places?  If so, can those speakers be made inoperative or have their volume adjusted to avoid interfering with residents and family caregivers having discussions or watching TV?  Are outside chairs, tables, and benches regularly cleaned of bird droppings and pollen?  Are seat cushions being set out each morning and brought in only if rain is imminent?  Are all public rest rooms cleaned on a scheduled basis?  Are spills cleaned up immediately?  Are coffee or juice machines repaired quickly?  ALR managers or their designees must walk their facilities, inside and out, on a daily basis to determine if any such issues need to be addressed.

Viewing family caregivers as advocates for their loved ones
Admittedly, Clare and I do not present the typical profile of an ALR dementia unit resident and family caregiver.  Clare was placed just months after turning 67 and is much younger than the other dementia residents.  Few ALRs have patients that young.  Except for 3 days when I was hospitalized for a surgical procedure, I have visited with Clare every single day since she was placed.  Few ALRs have experience with spouses of dementia residents visiting on a daily basis.  I am with Clare for at least four hours each day.  I recognize that my actions sometimes disrupt ALR routines.  For example, if I sign Clare out at 3 p.m. to go to the beach and then to a restaurant and not return until 7 p.m., Clare is not there when evening medications are given.  When I bring Clare back, an aide must then take the time to give her medications.  I probably ring the buzzer for an aide to come to unlock the dementia unit doors more than any other family caregiver.   During my daily visits, I probably observe ALR personnel and operational procedures a lot more in one day than most family caregivers do in a month.

When I observe situations where, in my opinion, aides or supervisors are not doing their jobs properly, I tell top management.  Some aides and supervisors undoubtedly see me as a complainer.  That is one way to view me, I suppose.  However, I see myself as an advocate.  I’ve gone from being Clare’s 24/7 caregiver at home to a part-time caregiver and full-time advocate for her in the ALR. 

I do not see myself in an adversarial position with ALR management.  To the contrary, I am proud to be able to say that top management at Clare’s ALR is as interested as I am in having her ALR rated “A+” each and every day.  The executive director is outstanding, as is one subordinate administrator, and I couldn’t ask for more responsive top management.  All institutional caregivers should seek as they do to work closely with family caregivers and advocates to further our common mission ... to provide the best care possible for each resident.

Friday, June 20, 2014

Looking Back at the Assisted Living Decision for a Loved One with Alzheimer's

Seeking out an Assisted Living Facility
My wife, Clare, was admitted into the “Reflections” unit of an assisted living facility in September, 2013.  “Reflections” is the name of a separate lockdown wing with 32 residents, all with some form of dementia but most with Alzheimer’s disease (AD).  I was Clare’s 24/7 caregiver while she struggled with her cognitive decline starting in 2006, even though Clare was not “officially” diagnosed with young onset AD until 2009, one month after turning 63.  When Clare’s decline had progressed to the point where I could no longer provide her with the quality of care she deserved, and when we began having daily arguments over routines such as bathing, dressing, eating and taking medication, I knew that we were approaching the time for an Assisted Living Residence (ALR) placement. 

When we had retired in 2000, we had discussed our thoughts about what we wanted should either of us ever need long term care.  We were aware of friends and family who had chosen different paths ... those who kept loved ones at home for as long as possible with 24/7 live-in help, and those who had placed loved ones in ALRs and nursing homes.  Neither of us wanted live-in help, so we took out long term health care insurance policies that would provide maximum coverage if an ALR or nursing home placement were ever to be needed.  Despite these preferences expressed more than a dozen years earlier, I again reviewed our options with Clare during lucid moments in 2013 prior to her ALR placement, and Clare again said she did not want to remain home with live-in assistance. 

I made a thorough search of Long Island ALRs that had separate units for those with dementia.  I wanted Clare placed in a facility that had certification to provide “continuity of care,” certification not held by most assisted living facilities.  In New York, some ALRs have EALR (Enhanced Assisted Living Residence) and/or SNALR (Special Needs Assisted Living Residence) certification.  Residents can usually remain in these ALRs until death, absent psychiatric disorders that can make a resident dangerous to oneself or others, or the need for 24/7 skilled nursing or medical care.  This was very important to both of us because we knew of caregivers whose loved ones with AD had to be discharged from their ALRs when they became totally incontinent or immobile.  Facilities holding EALR or SNALR certification also require aides to have ongoing specialized training to learn how to deal more effectively with people with dementia, and that requirement also made EALR and SNALR certified ALRs more attractive to us.

The good about Clare’s ALR
Placing Clare in her current ALR turned out to be a complete “win-win” decision.  She receives high quality care in their 32 bed Reflections unit, with a varied daily program of activities that keep her engaged and happy.  On most days, Clare has organized exercise periods twice a day ranging from Zumba, yoga, and balloon volleyball to walking, stretching, and other fitness activities.  On most days she has at least one art activity and one music activity, and on many days she has two different musical activities ranging from sing-alongs to listening to professional musicians who come regularly to sing and entertain.  Clare also participates in a wide range of other daily activities ... games, trivia contests, crafts, etc. ... and she watches matinee and evening movies in a dedicated cinema room that has a very large movie screen, theatre style seating, and even a popcorn machine! 

There are many other indoor and outdoor activities on site.  There are daily socials with different delicious snacks served each day, and daily meals are of restaurant quality.  Reflections residents also have the opportunity to go on frequent outings each month via mini-bus to see musicals in local theatres, to enjoy meals at various neighborhood restaurants, and to visit local museums at nominal charges.  There are also free outings for scenic drives and visits to nearby beaches and towns.  And, when appropriate, Reflections residents are taken to join non-Reflections residents to enjoy special entertainment activities provided by the ALR.  

As her spouse caregiver, I wanted Clare to be in a safe and secure environment, to receive high quality care, and to engage in enjoyable activities and socialization experiences each day once it was time for her to leave our home and live in an ALR.  Mission accomplished!  Clare and I are both happy that, given the reality she could no longer remain with me in our house, she is in a positive environment.  That is why I refer to this placement as a win-win.

The bad about Clare’s ALR
Clare’s ALR has a lot to offer its dementia residents.  This was and continues to be the best ALR for Clare and we are both pleased with our choice.  Whereas I would now assign this facility an overall grade of “A+,” some inconsistencies continue to disappoint me.  As a retired public school principal, I know firsthand how even the best of bureaucratic institutions is going to have “glitches” from time to time.  I also know that, on some days, the proverbial “Murphy’s Law” will frustrate the best administrators.   However, I also know that to maximize chances for mission success and minimize “glitches” and “Murphy’s Law” days from happening frequently, administrators must insure that staff is properly trained, informed of the high expectations and standards expected for daily performance, and regularly observed and supervised.  Few administrative tasks are more important.

I regularly witness all administrators committed to insuring the safety and well-being of Reflections residents, and some administrators definitely hold staff to very high performance expectations.  But I do not see all administrators providing the necessary supervision to ensure that all staff members are doing their jobs properly.  Since bringing ongoing concerns to the attention of the executive director, there has been tremendous improvement.  However, I should not have had to bring matters to the attention of the ALR executive director ... they should have been handled properly by subordinate directors with direct responsibility for the Reflections unit.

In addition, communication with some administrators was very uneven until the executive director intervened.  On some occasions I had waited as long as 12 days to receive responses to emails or voice mails.  Such delayed response time is totally unacceptable.  There were also several occasions when administrators were not on the same page with each other, with one administrator asking me to do something one way and another administrator asking me to do that same thing completely differently.  Therefore, it appears that this ALR’s internal communication among administrators was at times as poor as their external communication with caregivers.

Two Suggestions for Caregivers
I knew from Clare’s first day in her ALR that even though I was no longer Clare’s 24/7 caregiver, I did not relinquish my caregiving responsibilities completely after placement.   I would offer these suggestions for caregivers once they have placed their loved ones in an ALR:

1.  You will always remain a caregiver for your loved one.  Even though the ALR is now ‘in charge’ of your loved one’s life for most of the day, you must still make sure that your loved one is handling the activities of daily living properly ... eating well, sleeping well, etc.  You also need to be sure that your loved one’s adjustment to the ALR is as good as possible when first admitted, and that it continues to be a “good marriage.”  Over time you will discover how to maximize your visits, the best times to visit, the best times for other family and friends to visit, if occasionally taking your loved one out for meals or short day trips would be a positive action, etc.  You must also continue to ask questions to learn about any changes in your loved one’s behavior and activity participation because, sadly, you may not be able to count on ALR personnel to communicate those changes to you in a timely fashion.  You must always remain vigilant. 

If you are not pleased with your loved one’s placement, and are unable to make that adjustment easier despite all of your actions to help make that happen, meet with the highest level administrator of that facility.  You may be lucky as I was to find an executive director who will listen to your concerns and help to resolve them if at all possible.  If all of your efforts to bring about change are unsuccessful, however, in the most extreme situation it may even be necessary to seek a placement in a different facility.

2.  You must now also assume a new role as an advocate.  Once you have relinquished primary responsibility for 24/7 caregiving to the ALR, you must monitor how effectively that ALR is doing its job.  And you must be willing to tenaciously advocate for change when necessary.  Even in the best of ALRs, there may be a lack of sufficient staffing and/or supervision at times, and you must act as your loved one’s advocate if you observe unmet needs or actions requiring more attention.  Such is the situation in which I now find myself.  You may need to meet again and again with the people in charge who are responsible for making the changes you are seeking.  But you must not give up, regardless of obstacles that may be in your path and regardless of your frustration at the slow pace of improvement.  Remember, most ALRs, like most bureaucratic institutions, are inherently status quo oriented and resistant to change.  Too often the answer to a question about why something is done in a particular way, or the response to a suggestion for change, is a variation of, “Well, this the way we’ve always done it.”  So be prepared to continue advocating long and hard for the changes you want to see happen.  Chances are, most changes will come about slowly and incrementally.

Most importantly, caregivers must always remember that even in the most caring of ALRs, nobody is going to care about your loved one as much as you do.  Nobody.  So as your major role as your loved one’s caregiver decreases after an ALR placement, your new role as your loved one’s major advocate is just beginning.

Four Suggestions for ALR Executive Directors/Managers
I would also offer four suggestions for ALR executives to deal with the issues that I have raised in this article.  And remember ... these are suggestions for improvement at what I consider an A+ rated facility, even with its glitches.

1.  Meet occasionally with caregivers as a group.  Despite caregivers handing over almost all of the responsibilities for caring to the ALR, caregivers still know their loved ones better than anyone else.  Caregivers may be able to offer practical suggestions for improving daily operations, or suggest new activity programming opportunities, or make other helpful suggestions for improvement in routines or daily practices.  More importantly, caregivers can give valuable feedback regarding how your ALR’s mission may be compromised by staff.  Much akin to principals being available to meet with parents at monthly PTA meetings, ALR directors and managers could learn a lot from occasionally meeting with caregivers of their dementia residents.  Face-to-face meetings give the administrator the opportunity to clarify and explain policies, correct and defuse misinformation, and hear comments that may be very helpful to making their institution function more effectively and efficiently.

2. Impress upon all staff the need for timely communication with caregivers.  The last thing an ALR director or manager needs to hear from a caregiver is how concerns about their loved ones go unanswered or are ignored.  This is a sure way for bad PR to raise its ugly face in community discussions as well as possibly lead to negative reviews of your facility on internet sites.  This is especially harmful if such perceptions are formed as a result of the actions ... or inactions ... of just one or a few staff members who do not do their jobs properly, or who fail to respond to emails or phone calls in a timely fashion.  The ALR chief executive needs to learn about such matters while issues are easily resolvable.  Even if only one or two key staff members do not value timely communication with caregivers, that is one or two staff members too many.  Just as with the proverbial weak link in a fence, all staff must be on mission, not just most staff

3. Provide a handbook for caregivers of dementia residents  - Anything in the dementia unit that is at variance with overall ALR practices should be clearly stated.  The handbook should also include a staff list of names and titles of various administrators responsible for oversight of the dementia unit, along with names of aides on various shifts who will work with residents in the dementia unit.  Phone numbers and email addresses to facilitate contact should also be included.

4. Post in each room a list of care plan activities aides must carry out each day – Each dementia resident will have a different daily care plan requiring no, little, some or a lot of assistance with daily Activities of Daily Living (ADLs).  Whatever that level of care is, there should be a checklist posted somewhere in each room so all aides will know exactly what routines the dementia resident needs assistance in doing, and just how much assistance is needed.  For example, does the resident shower by him/herself requiring only that shampoo be provided, or must the aide actually apply the shampoo to the resident’s hair? 

The bottom line
Now closing in on a year after admission into her ALR, Clare’s AD decline has continued and she is more confused and more tired each day.  But despite this decline, Clare still looks younger and healthier than she has in years.  Perhaps this is because she is now exercising and socializing with friends each day.  Or, perhaps this is because she no longer has to worry about anything ... although, I am told by aides, she still gets anxious waiting for me to visit each day and misses me in the evenings.  However, when I visit with Clare each day, she is always smiling and telling me how happy she is and that she has had a wonderful day ... despite being unable to tell me about even one activity she participated in that day, or even one meal she has eaten, or able to recall where she went on an outing.  Can I realistically ask for more than that?

Clare’s ALR also keeps caregivers’ needs in mind.  When I come to see Clare each day, we often head first to their bistro, a room available 24/7.  There is a coffee machine where one can get everything from cappuccino to latte, regular or decaf.  There is also a juice machine, and snacks ranging from fresh fruit to several varieties of cookies are always available.  We then often go to sit in one of their many lounges.  Some have tables and chairs, some have sofas and easy chairs, and all have wide screen television sets mounted on the walls.  We can also go to relax in their library or living room should we want to do so.  Should I want to eat alone with Clare, or be joined by family and friends, I can reserve their private dining room for lunch or supper where, for nominal cost, we can select appetizers, entrees and desserts off the same menu given to the residents.  (Menus change daily.)  This room easily seats 10-12 people.  I can also reserve their ‘country kitchen’ at no cost and bring in my own food or have food delivered.  This room has a refrigerator and microwave oven, easily seating 20 around two large tables.  Clare and I have already had several family parties and holiday celebrations in this room with our children and grandchildren. 

Our children and grandchildren also appreciate the amenities of having quiet lounges to spend time with their mother/grandmother during their afternoon or evening visits ... while also availing themselves of juice and snacks from the bistro!  In addition, there is also a game room, computer room, billiard room, library, shuffleboard court, a golf putting green, a walking path and garden, and even an outdoor swimming pool for use by residents and guests.  Can I ask for more than that for when I visit with Clare each day, or for when our children and grandchildren come to visit with Clare?
                 
Are there still ongoing glitches and communication difficulties?  Yes, but now that one particular administrator and the ALR executive director have welcomed and been responsive to hearing my concerns, remaining issues are now resolved quickly. Clare is now receiving excellent care most of the time and enjoying her experience virtually all of the time. That will always be my bottom line ... is Clare happy and is she receiving high quality care.  The answer to both questions is an unqualified “yes,” despite the issues I have addressed in this article. 

Are my standards and expectations for personnel and operations at Clare’s ALR too high?  I don’t think so.  I would hope that all staff at all ALRs would aspire to achieve high quality care for its dementia residents, and be responsive to caregiver concerns in a timely fashion, 100% of the time.  Nothing less should be acceptable.

Published in Annals of Long Term Care (online only), June 20, 2014.  Access at: www.annalsoflongtermcare.com/topic/alzheimers-disease.




Tuesday, June 3, 2014

Placing a Loved One in Assisted Living

  (Original title, "Helping Caregivers After They Place a Loved One in Assisted Living")

Seven months after placing my wife, Clare, in the dementia unit of a nearby Assisted Living Facility (ALF) in September, 2013 I unexpectedly plunged into a weeklong bout of serious depression.   Until that time, I thought I had been dealing as well as could be expected while adjusting to Clare no longer sharing a bed with me at home after more than 46 years of a wonderful marriage.   

I had been visiting Clare daily from 3-5 p.m., leaving when she went into her dining room for supper.  Clare enjoyed participating in all of her ALF’s activities, but there were no scheduled activities between dinner and 7 p.m., and that time period was becoming increasingly difficult for her.  She would ask aides where I was, tell aides she missed me, asked if she could speak with me by phone, etc.  The social worker told me that Clare was so anxious and missing me so much at that time that an aide had to be with her 1:1 to keep her calm, and this was taking that aide away from being available to help other residents during that time.  The social worker suggested a one week experiment to ease her anxiety between 5:30-7 p.m.  For one week, I’d either hire an aide to be with Clare during that time period, or I could stay with Clare during that time, and then we’d re-evaluate the experiment.  That sounded like a good idea, so I suggested we begin the next day and that I would stay with Clare. 

The social worker also had something else to share with me, telling me that Clare had followed another gentleman to his bedroom the previous night, thinking that he was me.  By the time one of the aides noticed Clare and figured out what was happening, but before the aide could pull her away, Clare had already hugged him and kissed him on the lips while wishing him a good night.

I nodded my head when the social worker finished and said something like, “Well, I knew this day would come eventually so what you’re telling me doesn’t come as a complete surprise ... but I didn’t realize we were already at this point.”  What I didn’t say to the social worker was that I was completely devastated.  Clare had already been having difficulty remembering our children and grandchildren on some days.  But now it was clear that she was starting to forget me ... or at the very least, she was now confused at times with respect to always knowing who I am. 

That news pushed me into depression.  For many months I’d been watching Clare’s appetite diminish, her ability to speak in complete sentences virtually disappear, and her understanding of concepts and word meanings disappear more and more.  She became more frail and more dependent on others with respect to her activities of daily living.  I knew that I would be “the last to go” in her mind ... but this incident demonstrated that the time was getting closer when Clare would no longer remember that I am her husband.

I must have watched at least a dozen hours of television in bed each day that next week.  I ate all my meals in bed.  Except for visiting Clare each day, I did not leave the house.  In short, I had myself a week-long “pity party.”  I cried ... I cried a lot ... about how much I missed Clare and how our future plans had all gone up in smoke at such a comparatively young age (we are both 67).  I also gained 5 or 6 pounds, going to my “comfort foods” for ... well, for comfort ... and I only slept 3 or 4 few hours each night. 

I had apparently reached that place in my life that many Alzheimer’s spouses eventually come to know all too well.  I had to accept that Clare and I now had a relationship more like father-child than husband-wife.  I had to accept that, in a very real sense, I am now both married and widowed at the same time.  Toward the end of that week of depression and after much soul searching, I finally came to accept the reality that my life was forever changed.  Not that I didn’t know that earlier ... but it took me nearly 7 months of grieving followed by one week of depression and introspection, to fully accept the words in the Serenity Prayer.  I knew that I had to have “the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”  I was now “alone” in our house, all by myself, and Clare would never be here with me again.  I had to accept that, although still married, I am also now a “single man” in many respects and that I have to take back control of my new life.

Here are some suggestions that social workers may want to offer to caregivers based upon what I did to try to get mentally and emotionally healthy again ... to begin taking small steps towards building a new life for myself as a single person. 

1.  Make yourself a “To Do” list for major decisions to be made.
I made up a list of items that I needed to attend to, and then re-arranged those items in priority order.  My first item was to make a decision on whether or not I would stay in my home or move.  Other items on my list included personal appointments I had to make, such as meeting with our attorney and financial advisor, as well as scheduling various repairs and house maintenance.  Once I made the decision to stay in our current house, that led to an expanded list of “To Do” list items that needed attention ... going through all of Clare’s clothing and personal items that have remained untouched since she was admitted into the ALF, and going through the entire house room by room to make it more “livable” according to my needs now that it is just me living in our house.

2.  Get out of the house and set up a regular exercise plan
I went back to the gym three times a week, and went back to bowling, slowly building up my stamina since I’m still recovering from my two surgeries.  As I am writing this, I am already looking forward to returning to golf this spring and joining a summer bowling league.

3.  Remain active with friends and family.
I set up “dates” to do things with friends, mostly involving taking Clare out of the ALF to join them for lunch or supper but also to do things with friends by myself.    I have a weekly lunch date with friends, take my daughter out for breakfast at least once a week, etc.  In short, I am committed to getting myself out of my house to be with others.

4.  Talk about your feelings with others you can trust.
Fortunately, I am still in a loosely defined caregiver support group that meets weekly for lunch and we often call or email each other between those lunch dates.  I shared my feelings with my group members, and their support helped a lot.  I did the same with my best friends and close family members.   Each of them in their own way helped to snap me out of my weeklong depression when the bottom dropped out.  They continued to tell me they were worried about me and, most importantly, they each reminded me how I had to remain strong to be there for Clare ... sufficient motivation to get myself well!

5.  Try to eat and live a healthy life style.
I have battled a weight problem since I was a child, but I gained a lot of weight, 80 pounds, from the time Clare first started exhibiting symptoms of Alzheimer’s and I was now determined to take all of that weight off ... for good.  So, on most if not all days, I’m now eating healthier.  Hopefully, with exercise now back in my life plus additional walking that is also excellent therapy for my legs, I will lose those 80 pounds within two years.

6.  Memorize the Serenity prayer.
When I placed Clare in her ALF it was an emotional time for me, but I had not fully appreciated just how much my emotions continued to be strained even 6 months later.  When I “returned to normal” after my bout with depression, I was more accepting of the reality that Clare and I now and will forever lead separate lives ... except for the few hours a day we will spend together at her ALF or on a day trip outing.  I must make changes in my life to lead a healthier and more productive life style and I cannot let myself dwell in those “dark places” to think about what might have been, or should have been, or what will no longer be.  I now must fully internalize 5 words I have said so often these past few years ... “it is what it is.”

7.  Seek out professional help, if necessary.
If you are feeling delayed post-placement depression similar to what I experienced and you feel you cannot apply my suggestions to help snap you out of your funk ... and have tried, unsuccessfully, to apply other suggestions from people you trust ... then you should immediately seek out professional help from your doctor.  And listen to your close friends and family.  If they suggest that you seek professional help, don’t be shy.  Do it.  You now have a new life to live, one for the most part that will not involve your loved one.  Do whatever you need to do to make sure you can take those next steps, mentally and emotionally, in a healthy way.  As I was reminded, take whatever steps are necessary to end your depression, if for no other reason than to remain strong so you can be there for your loved one.

By the way, that one week experiment of my staying with Clare from 3-7 p.m. has been very successful.  On most days after I escort Clare to dinner at 5 p.m. in her unit, I go to an adjacent room to eat a “bag supper” that I bring with me. Then at 5:45 I pull Clare out to spend time with me in a lounge until her 7 p.m. activity.  On other days I’ve arranged for us to eat together in the ALF’s private dining room or have taken Clare out for dinner.  We are both enjoying that extra time together each day.


And such is my “new normal” ... married for 4 hours a day, and single the rest of the time.  It is what it is.

Published in Social Work Today, May/June 2014 issue, Vol. 14, No. 3, p.30.

Friday, May 23, 2014

Alzheimer's caregiving: The new normal

(Originally submitted with the title, "Alzheimer's Caregivers ... It is What it Is")                     

I’ve been dealing with my wife’s Alzheimer’s disease (AD) for nearly 8 years ... first as her 24/7 caregiver at home, and now as a part-time caregiver and full-time advocate since her placement in the dementia wing of an Assisted Living Facility (ALF) in September, 2013.  One of the many things I have learned through these years is that each new AD decline in behavior and/or skills always leads to a “new normal” period for us.  Each decline requires an adjustment to my wife’s inability to do something she had previously been able to do.  Social workers and other health care professionals can help prepare caregivers accept these new declines and learn how to deal with what lies ahead. 

When well-meaning friends and family ask how things are going, my response is always the same ... “it is what it is.”  There is absolutely nothing I or anyone else can do to prevent my wife’s new AD declines.  Caregivers must prepare themselves for each cycling of a “new normal” period, and the most important preparation is simply to accept that their loved one will, over time, only get worse ... never better.   It is very important for health care professionals to make this clear to caregivers.

For the first four or five years, my wife experienced a series of “cliff falls and plateaus.”  She would seemingly fall off a cliff with a steep decline in a particular area, stabilize as if on a plateau for a period of 3-6 months, and then fall off another cliff.  Our “new normal” only changed a few times a year during that time.

In recent years, however, my wife’s pattern of decline has dramatically changed to that of a slow but steady downward spiral.  She now exhibits incremental declines in multiple areas over many months before she plateaus.  And plateaus only last a few weeks now before a new slow but steady decline begins.  With multiple declines now coming so quickly, our “new normal” is constantly changing.   But since there is absolutely nothing I can do about what is happening, my attitude has remained, “It is what it is.”   

Once again, it is important for health care workers to prepare caregivers for the possibility of new patterns.  Caregivers need to know that loved ones living with AD will eventually become more and more dependent on others for their daily living activities.  And caregivers need to understand that once a new decline occurs, their loved one with AD will most likely never again regain that functioning.

When I placed my wife in her ALF, I knew it was the right decision for her as well as for me.  She happily engages in her many daily activities, and she is in a safe and secure environment.  She looks healthier, possibly due to her daily socialization and exercise, among other reasons.  But six months after her ALF placement, I suffered through a short bout of severe depression when my wife started to forget my name and I learned that she approached and kissed another man thinking he was me.  When I realized that our “spousal window” was starting to close ... that period of time when my wife knows me as her husband ... that reality was very difficult to accept. 

It’s not that I was in denial.  I wasn’t.  It’s not that I hadn’t known that this would eventually happen.  I knew.  However, it was still very difficult to accept that my wife’s latest decline had brought that eventuality closer.  Fortunately, after a very difficult emotional week, I snapped out of my depression.   I accepted that our new normal was again rapidly changing, and in less time than I had expected my wife will soon forget who I am.  There was absolutely nothing I could do.  It is what it is. 

Caregivers can deal better with these “new normal” periods if they remember to take better care of themselves.  Being a caregiver and advocate for a loved one is incredibly stressful.  It is a very bumpy ride.  Social workers and others who work with AD caregivers must counsel them not only to accept what they cannot change for their loved ones, but also to accept the need to maintain their own health.  Remind them that daily exercise, a good night’s sleep, a healthy diet, involvement in hobbies and activities, and socializing with friends ... common “remedies” for stress ... may very well be more difficult now.  However, these remedies for their own stress are still important and should be adapted to meet their current needs so they stay mentally, physically, and emotionally fit.  Needless to say, caregivers should also be counseled into attending a good support group with others who are in similar positions.   I know from experience how attending good weekly support group meetings can go a long way towards reducing caregiver stress.

Caregivers cannot properly care for their loved ones, nor be an advocate for the care of their loved ones who are in ALFs or nursing homes, if they do not take care of themselves first.  This is an important reality that health care professionals may have to discuss with caregivers many times.  But caregivers must find a way to accept this reality ... it is what it is.

Published in McKnight's Long Term Care News & Assisted Living.  May 19, 2014.  Access online only at www.McKnights.com/alzheimers/caregiving/the/new/normal/article/347490.

Thursday, May 15, 2014

The National Alzheimer's Project Act ... Missed Opportunities from a Caregiver's Perspective



Alzheimer’s disease (AD) is the 6th leading cause of death in this country, and the only cause of death among the top 10 killers with no effective means of prevention, treatment, or cure.  AD has a mortality rate of 100%.  An estimated 5.2 million people are already struggling with AD in this country, and deaths due to AD have increased 68% during the past decade. 1.  And yet, our National Institutes of Health (NIH) continue to underfund research on AD.  For each of the past five years, NIH funding for research on HIV/AIDS was six times greater than the funding for AD. 2.  These funding differences are particularly glaring when one considers that HIV/AIDS is not even among the top 10 causes of death in this country and there are 5 times as many people living with Alzheimer’s than living with HIV/AIDs. 3.  HIV/AIDS is not the only disease receiving more funding than Alzheimer’s.  Eye disease research, for example, receives three times as much funding as AD.   

In 2010, Congress unanimously passed the Federal National Alzheimer’s Project Act (NAPA) with aspirations of ending Alzheimer’s by the year 2025.  As reported in the New York Times, NAPA’s goal was to “accelerate the development of treatments that would prevent, halt or reverse the course of Alzheimer’s” and “improve the early diagnosis of Alzheimer’s disease and coordination of the care and treatment of citizens with Alzheimer’s.”  The Times article referred to NAPA as “a national plan to combat Alzheimer’s disease with the same intensity as the attacks on AIDS and cancer.” 4.

We are now in our fourth year of NAPA, but I have yet to see the “same intensity” with NIH funding AIDS research at six times and cancer research at twelve times AD funding.  At the time of its creation, one of the co-sponsors of the NAPA bill, Rep. Edward Markey (D-MA), said that NAPA was created “to create a sense of urgency.”  But since NAPA’s creation, Congress still hasn’t authorized increased AD funding, nor has the NIH re-allocated its research priorities.

In April, 2013, Harry Johns, president of the Alzheimer’s Association and a member of the NAPA Advisory Council, said:  “The Alzheimer’s epidemic is gaining momentum.  And with Alzheimer’s recently identified as the nation’s most expensive disease, it is now clear to everyone that we can no longer afford to ignore it.”  5.  Another year has passed and our nation continues to largely ignore AD.  In June, 2013, Johns noted that “caring for people with Alzheimer’s, the country’s most expensive condition, currently costs the nation $203 billion annually with projections to reach $1.2 trillion by 2050.” 6.   But ... still no sense of urgency to deal with AD.  The federal budget for 2014 proposes an additional $100 million for AD research.  Although such money would be helpful, it’s a proverbial drop in the bucket.  AD research and programs need billions, not millions, of federal dollars.

Without power to authorize new federal spending or re-direct current federal spending by NIH, NAPA cannot realistically hope to accomplish its goals.  Congress did not authorize NAPA to have “power of the purse strings” and that was a missed opportunity.  Another missed opportunity is NAPA’s Advisory Council membership.  NAPA legislation mandated an Advisory Council with all the “politically correct” federal agencies and non-federal organizations represented.  Two caregivers are also mandated, but only one is a 24/7 caregiver.  Its second caregiver member provided some caregiving for his father but cannot be a voice for what it is like to be a 24/7 caregiver.  7.
 
NAPA needs to have multiple 24/7 caregiver voices on its Advisory Council so Council members hear those voices at every meeting when they come together to set priorities.  Council members need to hear about how many doctors fail to inform people with Alzheimer’s and their caregivers about the existence of support groups, and resources available to educate them about the disease, or how doctors often continue recommending costly medications for their loved ones long after such medications are effective.  The Council needs to hear caregivers speak about the lack of available day care services and support groups and the severe economic consequences to caregivers without long term health care insurance when they need to place loved ones in assisted living facilities or nursing homes or hire full-time help at home. 

I was pleased to note that former Congressman Dennis Moore (D-KS) was appointed to NAPA’s Advisory Council in November, 2013.  Moore publicly announced his own AD diagnosis in 2011. The president of the Alzheimer’s Association said about Moore, “As a member of the Advisory Council, his perspective will contribute significantly to the conversations about the human and economic threats of the Alzheimer’s epidemic.”  8.  For that same reason, NAPA needs more 24/7 caregiver voices on its Advisory Council ... to gain caregivers’ perspectives firsthand about the human and economic threats they face each day.

In his Vision Statement for the 2013 update to the NAPA goal statement, President Obama wrote, “For millions of Americans, the heartbreak of watching a loved one struggling with Alzheimer’s disease is a pain they know all too well.  Alzheimer’s disease burdens an increasing number of our Nation’s elders and their families, and it is essential that we confront the challenge it poses to our public health.”  9.  Were the President and NAPA members listening to more caregiver voices, they would be more aware that AD is not just a disease affecting our “Nation’s elders.”  More than 200,000 people with Alzheimer’s are under the age of 65, some still in their 30s or 40s.   People diagnosed with AD under the age of 65 are referred to as having “young onset AD.”  I know about this firsthand, since my wife, Clare, was demonstrating clear symptoms of early stage Alzheimer’s at age 60 and later diagnosed as having young onset AD. 

In 1983, fewer than 2 million Americans were suffering with Alzheimer’s.  But that year, President Reagan signed a proclamation declaring November as National Alzheimer’s Disease Awareness Month.  He cited the need for more research, noting “the emotional, financial and social consequences of Alzheimer’s are so devastating that it deserves special attention.”  10.  In the 30 years since President Reagan’s proclamation, the number of people with AD in this country has gone from just under 2 million to more than 5 million and is expected to rise to around 15 million people by 2050.  However, our country has yet to reflect that “special attention.”  President Obama has now echoed President Reagan’s warning.  In another thirty years, will we hear yet another U.S. president say that AD “deserves special attention” or that “it is essential that we confront the challenge.” 

Adding billions of dollars for federal funding of AD research and programs, when our nation is mired in $17 trillion of debt, is not an easy task.  But we must do it anyway.  The president knows this and Congress knows this.  We must advance beyond “talking the talk” and start “walking the walk.”  We need to vastly increase funding for Alzheimer’s research and programs for those with Alzheimer’s and their caregivers, and we must listen carefully to the voices of caregivers when establishing goals and priorities for how to proceed.  And we must do this now.


1.  Alzheimer’s Association 2013 Alzheimer’s Disease Facts and Figures. Alzheimer’s Association (online).   Available at: www.alz.org/downloads/facts_figures_2013.pdf.   Accessed January 3, 2014.

2.  Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC).  U.S. Department of Health & Human Services, NIH Research Portfolio Online Report Tools (online).  Available at:  www.report.nih.gov/categorical_spending.aspx.  Accessed January 3, 2014.

3.  National Vital Statistic Reports, Vol. 61, No. 6, October 10, 2012.  Centers for Disease Control and Prevention.  Available at: 
www.cdc.gov/nchs/data/nvsr/nvsr61_06.pdf.  Accessed January 3, 2014.

4. With Alzheimer’s Patients Growing in Number, Congress Endorses a National Plan.”  The New York Times.  Available at: www.nytimes.com/2010/12/16/us/politics/16alzheimer.html?r=0&adxnnl=1&page.
Accessed January 3, 2014.

5.  Alzheimer’s Advisory Council evaluates progress implementing National Alzheimer’s Plan.  Alzheimer’s Association (online).  Available at: www.alz.org/news_and_events_national-plan.asp.  Accessed January 3, 2014.

6.  HHS Releases 2013 Update to the National Alzheimer’s Plan.  Alzheimer’s Association (online).  Available at: www.alz.org/news_and_events_hhs_releases_2013_update.asp.  Accessed January 3, 2014.

7. Non-Federal National Alzheimer’s Project Act Advisory Council Members.  U.S. Department of Health & Human Services (online).  Available at: www.aspe.hhs.gov/daltcp/napa/bios.shtml.  Accessed January 3, 2014.

8.  Former Congressman Dennis Moore To Share His Perspective On Living With Alzheimer’s As A Member Of The Advisory Council To The National Alzheimer’s Plan.  Alzheimer’s Association (online)  Available at: www.alz.org/documents_custom/advisory_council_statement_moore_112113.pdf.  Accessed January 3, 2014.

9.  National Plan to Address Alzheimer’s Disease: 2013 Update.  U.S. Department of Health & Human Services (online).  Available at:  www.aspe.hhs.gov/daltcp/napa/NatlPlan2013.shtml.  Accessed January 3, 2014.

10. November is Alzheimer’s Disease Awareness Month.  Alzheimer’s Association (online).  Available at: www.alz.org/swmo/in_my_community_15039.asp.  Accessed January 3, 2014.


Published in Journal of the American Geriatric Society, May 2014, Vol. 62, No. 5, pp. 966-967.  

Friday, April 18, 2014

Helping Caregivers Prepare for Emergencies

My wife, Clare, has Alzheimer’s, and was recently placed in the dementia unit of an assisted living facility.  However, when she was at home and I was her 24/7 caregiver, I had thought about what I would have done if an emergency had prevented me from caring for Clare each day.  This was an even more heightened concern once it became increasingly obvious to me that I would soon need hip replacement surgery.  If Clare were at home with me when I would have that surgery, I would have had to make arrangements for Clare’s 24/7 care for the period of my hospitalization and subsequent physical therapy in a rehabilitation facility.  Fortunately, by the time I needed my surgery I had already placed Clare in the assisted living facility, so she was well cared for during my hospitalization and rehab.  But what if I needed this surgery earlier, while Clare was still living with me at home?  What would I have done?

This worry comes up all the time among 24/7 spouse caregivers, especially those with no adult children or other close relatives living nearby.  Social workers should provide guidance to caregivers to make plans in advance should an emergency cause a sole caregiver to be unable to provide that 24/7 care for a loved one.

There are really only three options available to 24/7 caregivers if an emergency prevents them from caring for their loved one: rely upon family or friends, hire assistance from government or private agencies, or place a loved one in a respite or residential senior care facility on either a temporary or permanent basis.

Rely upon family or friends
If the caregiver is lucky enough to have family or friends who can come to the house to help out in an emergency, this may be an ideal solution.  There are no costs involved and the person needing care will be in a familiar environment with familiar faces.  However, family members and friends who suddenly find themselves in the role of a 24/7 caregiver may be easily overwhelmed when discovering all that caregiving involves.  Also, family and friends may only be available to remain for short periods of time.  However, if enough family members or friends are available, perhaps a “rotating” schedule can be prepared ... each day would be “covered” for 24 hours with different friends and relatives each providing several hours of care.  If no family members or friends can provide emergency coverage, then the caregiver must consider alternative solutions.

Seek assistance from government or private agencies
Hourly home companions, health aides, nurses, and even live-in help are all available for hire.  Such assistance can be for personal care, general supervision, to engage loved ones in hobbies and activities of interest, to do shopping, housekeeping, meal preparation, and a variety of other household tasks.  Caregivers should be urged to contact local, county, or state government health or senior citizen agencies, as well as local branches of the Alzheimer’s Foundation of America or the Alzheimer’s Association, to learn about available services where they live.  Local nursing homes, assisted living facilities, and senior care centers may also sponsor daytime programs, provide home care services, or even provide “respite” programs lasting days or weeks that can be part of a caregiving solution. 

However, caregivers must also be told that 24/7 home health care can be very expensive.  Expenses for such care will vary depending upon where one lives.  Where I live, the customary rate is around $20 per hour, meaning that costs for 24/7 care can add up quickly ... $480 per day, or $3360 per week.  Unless one has a long term health care policy that covers a large part or all of these costs, the loved one or caregiver can quickly go into debt.  Some 24/7 caregivers may think they are covered because they have long term health care insurance.  However, some long term health care insurance policies only provide coverage in assisted living facilities or nursing homes.  So caregivers must check their policies very carefully, if they even have such insurance, to see if home health care costs will be covered in part or whole.

Place your loved one in a facility
If a caregiver has already been considering placing a loved one in an assisted living facility or nursing home, and knows which would be chosen when the time comes, this becomes another option.  If a bed is available for a loved one, a sooner-than-planned placement would provide the 24/7 care necessary if a caregiver emergency arises.  Similarly, if an anticipated hospitalization or other event will prevent caregivers from providing that needed 24/7 care, then caregivers may want to consider an immediate placement of their loved ones. 

Just as with home health care, assisted living and nursing home placements are not cheap.  Where I live the cost in a typical assisted living facility is usually around $200 per day or $6000 per month.  Nursing home placements can easily be 50% more.  If caregivers have long term health care policies, they must check to see criteria for coverage.  And, if their loved one will be covered, caregivers must check carefully to learn what costs, if any, they may be responsible for paying.  For example, Clare’s policy had a 100 day deductible period and we were responsible for paying all costs during that time.

The responsibility of social workers
Caregivers must be advised to prepare for emergencies that may prevent them from caring for their loved ones, and to plan ahead for such a possibility.  Caregivers never know when an emergency or unanticipated event may make their caregiving for a loved one a lot more difficult, if not impossible.  The time to make such plans is before any emergency arises. 


Caregivers should be advised to speak with family members and friends, investigate sources of government or private agency assistance, and explore temporary and long term residential placement options should an emergency arise.  Caregivers who do that will be much better prepared to act if they ever need to implement emergency procedures to care for their loved one.

Published in Social Work Today e-Newsletter, online only.  Access at: www.socialworktoday.com/enewsletter/2014/april/


Wednesday, March 12, 2014

A Caregiver's Wish List for a National Alzheimer's Agenda

Our federal government continues to provide a comparatively low level of federal funding through National Institutes of Health (NIH) grants for Alzheimer’s Disease (AD) research.  Combined spending by NIH in 2012 and 2013 for AD research is less than $1.05 billion, yet during this same two year period NIH will fund $1.68 billion of research on eye disease and disorders of vision. 1.  Eye disease and disorders of vision are not listed among the top 10 causes of death in this country according to the most recent data from the Centers for Disease Control (CDC).  However, Alzheimer’s is listed as the 6th leading cause of death. 2. AD is also the only cause of death among the top 10 killers with no effective means of prevention, treatment, or cure.  The survival rate is zero.  The mortality rate is 100% and deaths due to AD have increased 68% during the past decade 3.  And yet, research on many diseases not on the CDC list of major causes of death routinely continue to receive more NIH funding than Alzheimer’s.

In a June, 2013 proposal for more state funding for AD research, New York Congressman Steve Israel noted that, “Alzheimer’s is the most expensive malady in the United States, but federal investments in researching the disease are at an all-time low.”  With current yearly costs for caring for people with Alzheimer’s at $203 billion ... costs projected to rise to $1.2 trillion by 2050.  Rep. Israel further noted that, “researching the disease is not just a matter of compassion for a cure; it is a public policy imperative.” 4.

My wife was diagnosed with Alzheimer’s in 2009 at the age of 63. Here is my “wish list” for a National Alzheimer’s Agenda.”

Wish List items requiring more funding:

1.  The federal government must greatly increase funding for basic research into the causes of AD, and to do that NIH must change its funding priorities.  Federal grants should also be given to states to disburse to local research labs working on neurodegenerative diseases. 

2.  We also need increased federal funding to subsidize clinical trials for potentially new AD medications.  Trials should last at least one year and require follow-up study to be sure there are no long term side effects.  FDA approved AD medication should be required to have a label indicating its effectiveness has only been proven for some people for the period of time of the clinical trials.  Current FDA approved AD medications found “effective” for “some” participants in clinical trials lasting only 26 weeks are often prescribed for many years with no evidence to indicate that they remain effective.  Labels would alert caregivers and patients that their doctors are prescribing costly medication that may no longer be effective, and such money may be better spent on other patient or caregiver needs.  5.

There is a movement by some to “fast track” the approval process for new AD medications.  However, briefer clinical trials can result in medications having unintended consequences, such as unanticipated side effects that may only present when a patient receives that medication for a longer period of time.  In addition, “effectiveness” in a brief trial of a few weeks or months may not be demonstrated after 12 months or longer.  Unless fast track approval is requested for a medication that may potentially stop or reverse AD declines immediately, the wiser course of action is to let clinical trials proceed for at least a year.  It is neither fair nor wise to drain money from patients and caregivers for medication that may be shown to be ineffective or harmful only months after usage begins. 

3.  States must provide money to local AD organizations, assisted living facilities, non-profit social organizations, hospitals, and nursing homes to create more special focus AD caregiver support groups.  Such groups not only educate caregivers about how to deal effectively with loved ones with AD, but just as important they can provide caregivers the emotional support they need.  No one ‘gets it’ like a fellow AD caregiver.  Although each caregiver’s situation is different ... if you know one person with AD, then you know one person with AD ... and all caregivers are paddling in different boats ... all of those boats are paddling in Lake Alzheimer’s.

4.  States must similarly provide more money for AD day care programs, respite programs, companion services, and home health aide services.  At some point, many people with AD will need to be placed in assisted living or nursing home facilities, but access to less costly programs would allow some caregivers to keep their loved ones at home for a longer period of time.  If not poor enough to qualify for Medicaid, and not fortunate enough to have long term health care insurance or sufficient funds to pay skyrocketing monthly placement costs, assisted living or nursing home costs can easily consume the caregiver’s entire retirement nest egg. 

Wish List items requiring changes in protocols for many doctors:

5.  Doctors must pay more attention to what caregivers tell them during office visits!  Too often, caregiver observations of AD symptoms in their loved ones are ignored by doctors if AD symptoms are not demonstrated on tests or observed during office visits.  Frustrated caregivers too often watch their loved ones initially treated for stress, anxiety, depression or a variety of other issues instead of being treated for the worsening AD symptoms that they routinely observe on a daily basis.  We already have research supporting the effectiveness of brief caregiver questionnaires to screen for AD.  Doctors should administer a screening questionnaire to any caregivers expressing concerns about a loved one.  The AD8 questionnaire only takes about 2 minutes to administer.  Even the most time pressured doctor can find 2 minutes to follow up on caregiver concerns about a loved one’s symptoms that may very well be early signs of AD.  6.

6.  Doctors must inform patients and their caregivers about support groups and helpful programs when issuing an AD diagnosis.  Too many caregivers must learn by themselves about available support programs for themselves and those with AD.  Doctors must do a much better job of empowering patients and caregivers with such information, and providing a simple handout would be very helpful.  7.

7.  Doctors who issue AD diagnoses should provide a brief handout explaining the stages of the degenerative progression of AD over time.  Either at or shortly after diagnosis, doctors must level with their patients and caregivers about treatment options and disease progression so they can plan accordingly.  Patients and caregivers must receive accurate information about their disease to allow them time to make sure certain documents are in order ... will or trust, living will, health care proxy, durable power of attorney ... and time to meet with an eldercare attorney and/or a financial advisor to properly prepare for their futures. 8.

8.  Doctors should be required to report every AD diagnosis to their state Department of Motor Vehicles, which in turn should mandate surrender of driver’s licenses as soon as possible ... but no later than one year after diagnosis.  Some people with AD will be able to drive safely for more than one year, but many won’t.  By definition, an AD diagnosis implies mental impairment that will, eventually, impact one’s ability to drive a vehicle safely.  One year is more than enough time for someone with AD to arrange for other means of travel, if necessary.  A person with AD who continues to drive after diagnosis potentially places that person, anyone else inside that person’s vehicle, people in other vehicles, and innocent bystanders in harm’s way.  9.

Wish List items requiring caregiver voices and the political will to change

9.  Local, state, and national AD advisory panels must seek more input directly from 24/7 caregivers.  All too often, advisory panels are limited to members of government agencies, research facilities, lobbying groups, and caregivers representing widely known AD organizations.  While such panel members definitely have much to contribute, 24/7 caregivers unaffiliated with any AD organizations also have much to contribute.  Wouldn’t insights gained from daily caregiver experiences be helpful in shaping local, state, and national AD polices?  Unless someone lives 24/7 with a loved one who has AD, one cannot possibly have even the remotest idea of what an AD caregiver’s life is like.

I was pleased when president Obama signed the Federal National Alzheimer’s Project Act (NAPA) into law in 2011, but the 26 member NAPA Advisory Council has only one member who is a 24/7 AD caregiver.  10.  NAPA must add more 24/7 caregiver voices to their Advisory Council to hear firsthand about how unavailable services affect caregivers and their loved ones, and how available services are often beyond a caregiver’s ability to pay.  Without hearing such caregiver voices, NAPA is not as inclusive as it should be when making recommendations for action.

10.  In 1983, when fewer than 2 million Americans were suffering with Alzheimer’s,  President Reagan ... who, ironically, would later be diagnosed with and die from AD complications ... signed a proclamation declaring November as National Alzheimer’s Disease Awareness Month.  He cited the need for more research, noting “the emotional, financial and social consequences of Alzheimer’s are so devastating that it deserves special attention.”  11.

Thirty years later, more than 5 million people are now suffering with Alzheimer’s ... a number expected to reach 14 million by 2050. 12.  In his Vision Statement for the 2013 update to the NAPA goal statement, President Obama wrote, “For millions of Americans, the heartbreak of watching a loved one struggling with Alzheimer’s disease is a pain they know all too well.  Alzheimer’s disease burdens an increasing number of our Nation’s elders and their families, and it is essential that we confront the challenge it poses to our public health.”  13. 

The President’s reference to our ‘Nation’s elders’ reflects a lack of knowledge that more than 200,000 people with Alzheimer’s are under the age of 60, some still in  their 30s or 40s.  More importantly, when will we start to “confront the challenges” posed by AD?  It’s now more than 2 years since NAPA’s creation, but NIH is continuing to fund AD research near the same relatively low levels and I see no legislation indicating that we are confronting those challenges.

We as a nation must have the political will to make tough choices now during these difficult economic times.  The president knows this.  Congress knows this.  And yet, it seems that another president thirty years from now will echo Presidents Reagan and Obama to say that AD “deserves special attention” or that we must “confront the challenge.”  Thirty more years is too long to wait.  The time for our country to deal with the human and economic burdens of Alzheimer’s is now.   
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1.  Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC).  U.S. Department of Health & Human Services, NIH Research Portfolio Online Report Tools (online).  Available at:  www.report.nih.gov/categorical_spending.aspx.  Accessed July 16, 2013.

2.  National Vital Statistic Reports, Vol. 61, No. 6, October 10, 2012.  Centers for Disease Control and Prevention.  Available at: 
www.cdc.gov/nchs/data/nvsr/nvsr61_06.pdf.  Accessed July 16, 2013.

3.  Alzheimer’s Association 2013 Alzheimer’s Disease Facts and Figures. Alzheimer’s Association (online).   Available at: www.alz.org/downloads/facts_figures_2013.pdf.   Accessed July 16, 2013

4.  Pols call for statewide Alzheimer’s effort.  Newsday, June 17, 2013.

5.  Vann AS.  Current Alzheimer’s Medications: Effective Treatment Options or Expensive Bottles of Hope?  Journal of the American Medical Directors Association, July 2013, Vol. 14, No. 7, pp. 525-526.

6.  Vann A.  Listen More Carefully to Alzheimer’s Caregivers.  Journal of the American Geriatrics Society, October, 2012, Vol. 60, no. 10, p. 2000.

7.  Vann AS.  Caregiver Support Groups.  Clinical Trials: Journal of the Society for Clinical Trials.  Currently in press.

8.  Vann A.  Empowering people with Alzheimer’s disease and their caregivers – There is still much work to be done.  Dementia, March, 2013, Vol. 12, No. 2, pp. 155-156.

9.  Vann A.  Please Tell Alzheimer’s Patients Not to Drive.  Journal of the American Geriatrics Society, March, 2012, Vol. 60, No. 3, pp. 597-598.

10. Non-Federal National Alzheimer’s Project Act Advisory Council Members.  U.S. Department of Health & Human Services (online).  Available at: www.aspe.hhs.gov/daltcp/napa/bios.shtml.  Accessed July 16, 2013.

11. November is Alzheimer’s Disease Awareness Month.  Alzheimer’s Association (online).  Available at: www.alz.org/swmo/in_my_community_15039.asp.  Accessed July 16, 2013. 

12.  Alzheimer’s Association 2013 Alzheimer’s Disease Facts and Figures (online).   Available at: www.alz.org/downloads/facts_figures_2013.pdf.  Accessed July 16, 2013.

13.  National Plan to Address Alzheimer’s Disease: 2013 Update.  U.S. Department of Health & Human Services (online).  Available at:  www.aspe.hhs.gov/daltcp/napa/NatlPlan2013.shtml.  Accessed July 16, 2013.

Published in American Journal of Alzheimer's Disease & Other Dementias.  Vol. 29, No. 2, March, 2014, pp. 11-113.