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:

Friday, August 1, 2014

Bowlen, Broncos can raise awareness of Alzheimer's

(Original title, "Pat Bowlen and Alzheimer's.")

Pat Bowlen’s resignation from Bronco ownership due to Alzheimer’s affords the Broncos a wonderful opportunity to pay tribute to their former owner and help him and all Americans dealing with Alzheimer’s. Each October the Broncos and all NFL teams promote breast cancer awareness.  Players wear pink on their uniforms to show support for those diagnosed with breast cancer and to stimulate greater awareness.  Each November our country celebrates National Alzheimer’s Awareness Month.  The Broncos can wear purple in November to show support for all those diagnosed with Alzheimer’s and to stimulate greater awareness.  Bronco announcers can promote Alzheimer’s awareness.

Alzheimer’s is the 6th leading cause of death in this country, and the only disease among the top ten killers that has no effective means of prevention, treatment, or cure.  In September, 2012, the federal Centers for Disease Control issued a report based upon a study of nearly 3500 NFL retirees that concluded, “NFL players are three times as likely as the general population to die from a neurodegenerative disease such as Alzheimer’s disease or Parkinson’s disease.”

It would seem that honoring Pat Bowlen and more than 5 million other Americans dealing with Alzheimer’s would be a natural fit for the Broncos, as well as for all NFL teams.  Bronco and all NFL radio and TV broadcasts in November can increase awareness to help find a way to prevent, treat, and finally cure Alzheimer’s. That would be a wonderful tribute to Mr. Bowlen and an immense public service to others.

Cancer is a horrible disease.  My mother died of cancer.  I hope that NFL players continue wearing pink and NFL announcers continue promoting cancer awareness and research every October.  But Alzheimer’s is also a horrible disease.  My wife has Alzheimer’s.  I hope that Bronco players begin wearing purple and NFL announcers begin promoting Alzheimer’s awareness and research each November.

Pink is extremely important. So is purple.

Published in The Denver Post, 7/27/2014 ... Guest Commentary in the Post Opinion section.  Access at:

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:

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

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:   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:  Accessed January 3, 2014.

3.  National Vital Statistic Reports, Vol. 61, No. 6, October 10, 2012.  Centers for Disease Control and Prevention.  Available at:  Accessed January 3, 2014.

4. With Alzheimer’s Patients Growing in Number, Congress Endorses a National Plan.”  The New York Times.  Available at:
Accessed January 3, 2014.

5.  Alzheimer’s Advisory Council evaluates progress implementing National Alzheimer’s Plan.  Alzheimer’s Association (online).  Available at:  Accessed January 3, 2014.

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

9.  National Plan to Address Alzheimer’s Disease: 2013 Update.  U.S. Department of Health & Human Services (online).  Available at:  Accessed January 3, 2014.

10. November is Alzheimer’s Disease Awareness Month.  Alzheimer’s Association (online).  Available at:  Accessed January 3, 2014.

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