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.  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.