Tuesday, March 14, 2017

10 New Year's Wishes for Alzheimer's Caregivers

Although my wife passed away last year after her ten year battle with Alzheimer’s disease (AD), as a former spouse caregiver I will always remain an advocate for improving the diagnosis and treatment of people with Alzheimer’s.  Here is my wish list to improve the lives of caregivers as we begin a new year.

1.  I wish that our government provided much more money for AD research to find ways to prevent, effectively treat, and cure this horrible disease.  If we funded AD research at the level we fund research for cancer and heart disease, perhaps we could come up with effective treatments sooner and maybe even learn how to prevent Alzheimer’s disease.

2.  I wish that there were more support groups designed solely for AD spouses.  Most AD support groups are open to all caregivers, but spouse caregivers have unique mental, emotional, and financial needs.  Spouse caregiver groups should be able to meet weekly when possible, but at least on a biweekly basis.  For a spouse with a pressing need, waiting one month to discuss that need is much too long. 

3.  I wish that national and local AD organizations provided support groups designed exclusively for recent AD widows and widowers.  Whereas there are some support groups available to all widows and widowers, those for AD widows and widows are few and far between.  Organizations already providing support groups for AD spouse caregivers should continue providing support for those same caregivers after they lose their spouses to AD.

4.  I wish that there were more social daycare programs specifically tailored for those with AD.  Generic daycare programs for seniors are fine, but too often they are staffed by personnel who have had no training for how to deal with those seniors with forms of dementia.  Ongoing staff training should also be provided at assisted living facilities, nursing homes, hospice, and any other facilities where people with AD receive care.

5.  I wish that there were more social daycare programs with extended hours for those with AD.  Caregivers who are still working or who simply need more respite time would have a lot less stress in their lives if there were more available programs that begin early in the morning and end later in the evening.

6.  I wish that more high profile entertainers, athletes and professional sports teams “adopted” their local AD organization as one of their favorite charities.  Promotion of local AD organizations through public announcements, charitable events, and annual gifts by high profile public personalities would raise the visibility of AD organizations and possibly encourage more gifting and support.

7.  I wish that local AD organizations more extensively explored “partnerships” with neighboring town senior citizen programs to seek greater local, state, or federal funding grants to support more local AD programs. 

8.  I wish that local AD organizations distributed brochures describing their programs to the local offices of general practitioners, internists, neurologists, geriatric psychiatrists, memory disorder clinics, hospitals, and anyone else in the medical field working with patients who may be experiencing AD.  Doctors should give these brochures to their AD patients and caregivers, and also have brochures available in their waiting rooms for anyone worried about AD or memory issues.

9.  I wish that local AD organizations sold items with their logos on them (shirts, sweatshirts, baseball caps, umbrellas, shopping bags) so their “advertising” would alert others both to their existence and their availability to help caregivers. 

10.  I wish that all doctors who prescribe AD medication would become more knowledgeable with the research on the efficacy of those meds and avoid automatically renewing prescriptions for costly AD medication that cannot possibly be effective anymore, if they were even effective at all for the first year or two. Money spent on ineffective medication could be much better spent on other patient and caregiver needs.

If you would like Dr. Vann to respond to questions or comments about this article, please email him directly at acvann@optonline.net.  You can learn more about his journey with Alzheimer’s at www.allansvann.blogspot.com where you can also read his articles that have been published in caregiver magazines, medical journals, and in major newspapers.   All of his columns on The Huffington Post may be accessed at www.huffingtonpost.com/allan-s-vann.  

Published in Today’s Caregiver, January/February, 2017,pp. 14-15.

Free Respite Opportunities for Alzheimer's Caregivers

  
Caregivers for loved ones with Alzheimer's disease (AD) often experience significant stress caused by their daily caregiving responsibilities.  Some caregivers who feel the need for respite may be able to rely on family or friends to assume their caregiving responsibilities for a brief period of time at no monetary cost.  Some caregivers may live near facilities or organizations where they can enroll their loved ones in social day care programs which would then allow caregivers a period of respite each week.  Costs for such programs vary around the country.  Similarly, some assisted living facilities and adult homes may admit a person with AD for a limited number of days to permit the caregiver to have some respite, but such facilities may charge a considerable fee for such a service. 

However, there are some programs that provide periods of respite for AD caregivers at no cost.  Readers who want to learn more about these programs  should go to the websites of these organizations to learn more.  

The National Administration on Aging (http://www.aoa.gov/AoARoot/AoA_Programs/HCLTC/Caregiver/index.aspx) provides information on respite opportunities that may be available to you through their National Family Caregiver Support Program (NFCSP).  This program funds state partnerships with community service groups to provide support for family caregivers.  Another federal government site, Alzheimer's Help (http://www.alzheimers.gov/help.html) also provides information for AD caregivers about respite opportunities, with suggested contact information for additional organizations.

The Senior Companion program (http://www.seniorcorps.org/rsvp/senior-companions/) is one of several programs provided by Senior Corps, a national volunteer program that coordinates volunteers aged 55 and over to provide assistance in their local communities.  If your community has such a program, volunteers may be able to provide free respite for AD caregivers by providing several hours supervising loved ones or helping with household chores. 

The U.S. Department of Veterans Affairs (http://www.caregiver.va.gov/support/support_services.asp) offers programs designed specifically to support caregivers of veterans, including up to 30 days of respite per year, either in the caregiver's home "or through temporary placement of a Veteran at a VA Community Living Center, a VA-contracted Community Residential Care Facility, or an Adult Day Health Care Center."  The VA will also provide respite care "in response to a Family Caregiver's unexpected hospitalization, a need to go out of town, or a family emergency."

State Lifespan Programs (http://archrespite.org/lifespan-programs) are offered by various states that have applied for grants provided by the U.S. Department of Health and Human Services through its Administration for Community Living.  More than 30 states have already received such grants to provide respite programs.  To see if your state is a recipient of a Lifespan grant, readers should go directly to the Lifespan website.  Different states offer different programs.

The Family Caregiver Alliance (http://www.caregiver.org) is a non-profit organization that maintains a resource center in the San Francisco Bay area of California that provides respite opportunities.  The Alliance also maintains a map with a separate Family Care Navigator (https://www.caregiver.org/family-care-navigator) where caregivers can click on their own state and be referred to specific information about caregiver respite programs available in that state.

Hope Health (http://hopehealthco.org/HopeDementiaRespite) is the largest non-profit hospice and palliative care provider in New England.  Caregivers in Rhode Island and Massachusetts are able to apply for three types of respite grants ... in-home care, adult day care, and in-facility overnight care ... once each year.  The in-home grant provides a nurse at no cost for three three-hour periods to allow caregivers to attend Hope Health support groups. 

Road Scholar (http://www.roadscholar.org) is the nation's largest not-for-profit educational travel organization, dedicated to inspiring adults to learn, discover, and travel by enlisting world-renowned faculty and local experts to immerse participants in experiential learning activities.  In 2015, Road Scholar created The Caregiver Grant (https://www.roadscholar.org/about/financial-assistance/caregiver-grants) to provide respite time for family caregivers by providing grants of up to $1300 to help offset costs of an educational travel experience.  Individuals 50 and older living in the United States and currently serving as caregivers ... or caregivers who have lost loved ones within the past two years ... are eligible to apply for a grant, regardless of whether the loved one is receiving or had received home care, adult day care, hospice care, memory care, nursing home care, visiting nurses, or comparable or related services.

Caregiver Grant recipients are responsible for their own transportation to and from their travel destination, but Road Scholar will cover all other costs ... accommodations, meals, taxes, gratuities, a travel protection plan, and any fees for lectures and activities up to that $1300 amount.  Specific information about Road Scholar caregiver grants, including application forms, may be found on their website.

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If you would like me to respond to questions or comments about this article, please email me directly at acvann@optonline.net.  You can learn more about my journey with Alzheimer's at www.allansvann.blogspot.com where you can also read my other articles about Alzheimer's disease that have been published in caregiver magazines, medical journals, and in major newspapers.  You can read my Alzheimer’s blog columns on The Huffington Post at www.huffingtonpost.com/allan-s-vann.


Published in Today’s Caregiver, February 7, 2017.  Access online only at:




Alzheimer's and the 21st Century Cares Act

A bill known as the EUREKA Act 1 ... “Ensuring Useful Research Expenditures is Key for Alzheimer’s” ... was introduced with bipartisan support (62 co-sponsors) in the U.S. Senate by Mississippi Senator Roger Wicker in 2015, and in 2016 companion legislation 2 was introduced in the House of Representatives with 37 co-sponsors.  This Act was intended to “establish EUREKA Prize Competitions to accelerate discovery and development of disease-modifying, preventive, or curative treatments for Alzheimer's disease and related dementia, to encourage efforts to enhance detection and diagnosis of such diseases, or to enhance the quality and efficiency of care of individuals with such diseases.” 1

Funding for the EUREKA Act 
3 called for annual award amounts not to exceed $10,000,000 for each fiscal year from 2017 through 2021, with a provision that such funding would not supplant any other NIH funding for Alzheimer’s research. 

On December 13, 2016, President Obama signed into law the “21st Century Cures Act,” 
4 a $6.3 billion package of healthcare legislation that incorporated some aspects of the proposed EUREKA Act.  According to the press release of Tennessee Representative Steve Cohen, one of the House sponsors of the proposed EUREKA Act, the EUREKA section of the 21st Century Cures Act 5 would instruct the Director of the National Institutes of Health (NIH) “to support prize competitions to accelerate the discovery and development of treatments to alleviate, prevent, and cure certain diseases, like Alzheimer’s.”

However, unlike the proposed EUREKA Act, the 21st Century Cures Act does not allocate a specific sum of money to be spent solely on Alzheimer’s research.  Of the $6.3 billion allocated by the 21st Century Cures Act, $4.8 billion is authorized for the National Institutes of Health (NIH), $1 billion for states to use for opioid abuse and treatment programs, and $500,000 for FDA matters.  Of the $4.8 billion NIH funding, “$1.4 billion is for President Obama’s Precision Medicine Initiative, $1.8 billion for Vice President Biden’s Cancer Moonshot, and $1.6 billion for the BRAIN initiative.” 
4

Money set aside for the BRAIN (Brain Research through Advancing Innovative Neurotechnologies) initiative, was established by President Obama in 2013 “to help researchers uncover the mysteries of brain disorders, such as Alzheimer’s and Parkinson’s diseases, depression, and traumatic brain injury (TBI).”
6 Unlike the proposed EUREKA legislation, the BRAIN initiative is not focused solely on Alzheimer’s, so just how much of the $1.6 billion set aside for BRAIN that will actually be spent specifically on Alzheimer’s research remains to be seen.

The 21st Century Cures Act legislation does represent progress.  However, until our federal government commits massive amounts of money to specifically target Alzheimer’s research, as it has done for several decades to learn more about cancer and heart disease, Alzheimer’s will remain a major killer of Americans, a massive stress inducer to millions of caregivers, and a major cost burden for our Medicare and Medicaid programs.

If you would like Dr. Vann to respond to questions or comments about this column, please email him directly at acvann@optonline.net.  You can learn more about his journey with Alzheimer’s at 
www.allansvann.blogspot.com where you can also read his articles that have been published in caregiver magazines, medical journals, and in major newspapers.   All of his columns on The Huffington Post may be accessed at www.huffingtonpost.com/allan-s-vann.  
  1. https://www.congress.gov/bill/114th-congress/senate-bill/2067/all-info
  2. https://www.congress.gov/bill/114th-congress/house-bill/5073/all-info
  3. https://www.congress.gov/bill/114th-congress/senate-bill/2067/text
  4. http://www.healthcare-informatics.com/article/interoperability/president-obama-signs-21st-century-cures-act-law
  5. https://cohen.house.gov/media-center/press-releases/cohen-hails-senate-passage-eureka-act-part-21st-century-cures-act
  6. https://www.whitehouse.gov/brain

Today's Caregiver, March 14, 2017.  Access online only at: 

Thursday, March 9, 2017

Cautioning Caregivers About Long-Term Care Insurance

When my wife, Clare, and I retired in the year 2000, we made sure to update our end-of-life documents—our wills, living wills, health care proxies, and power of attorney. And, even though only in our mid-50s, we also decided to purchase long-term care (LTC) insurance policies.
Sadly, only six or seven years into our wonderful retirement, I began noticing that something was wrong with Clare. A few years later, in 2009, Clare was diagnosed with probable early onset Alzheimer’s disease. In the fall of 2013, her Alzheimer’s advanced to where I could no longer properly care for her needs by myself at home, so she entered into an assisted living facility (ALF).
I activated her LTC policy to cover those expenses, and, after the initial deductible period, all of Clare’s expenses at that facility were covered in full. By the winter of 2016, however, even after hiring 24/7 personal aides at my own expense, it was clear that she would receive better care in a nursing home (NH). The daily NH charges would be significantly higher than those in her ALF, but that didn’t matter to me because I knew they would be covered in full by my excellent LTC policy. 
Or so I thought. It turned out that I was wrong, and here is why.
While waiting for a NH room to open, Clare woke up one morning in her ALF unable to stand up. She was admitted to our local hospital’s emergency room for diagnostic testing. After a few days, and with the use of a walker, she was able to walk again, albeit unsteadily. The social worker indicated that the hospital would not release Clare back to her ALF because she needed rehabilitation services in a skilled nursing facility. I told the social worker that was fine because I had planned to move her to such a facility anyway. After a hospital stay of five days, she was transferred by ambulance to the NH of my choice. 
Thirty-one days after Clare’s admission to the NH, she passed away quietly in her sleep. My feelings of overwhelming sadness were, to a degree, comforted by knowing that Clare was in a “better place” now. A loved one slowly dying of Alzheimer’s disease is a horrible experience, not just for the loved one with the disease, but also for the loved one’s caregiver.
What I had not realized at the time of her NH admission, however, was that Clare’s intervening hospital stay of five days had triggered a clause in her LTC policy that I had known nothing about—and didn’t learn about until many months later—that ended up costing me money I did not expect to have to pay.
Several months after Clare’s death, I received a bill from the NH for several thousands of dollars. It seemed that Medicare fully reimbursed the NH for Clare’s first 20 days there but then only paid a portion of the charges for her remaining days. I called the NH and told them to please forward that bill to the LTC insurance company. However, the NH called me back several weeks later to say that the insurance company refused to pay, saying that I was responsible for paying those outstanding charges. 
When I spoke with the insurance representative handling Clare’s case, I was told about the “Tax Qualification Endorsement” policy addendum clause in Clare’s policy that, apparently, everyone with LTC insurance policies should know about; that clause reads: “It is intended that the Policy be a qualified long-term care insurance contract under section 7702B(b) of the Internal Revenue Code of 1986”—this cryptic clause meant that, since Clare had been hospitalized for more than 3 days immediately preceding admittance into the NH, Medicare rules applied to all NH costs.
Basically, had Clare been discharged from the hospital back to the ALF within 3 days, or had she been discharged from the hospital to the NH within 3 days, her insurance policy would have picked up all costs at either facility. Similarly, had Clare gone directly from the ALF to the NH without an intervening hospital stay of 3 or more days, her insurance policy would have covered all daily NH charges for her entire stay. 
Had I known about the existence and significance of this provision in Clare’s policy, I would have made different placement decisions concerning her care. Since I had already made the decision to move her to a NH, and even discussed this with personnel at her ALF, I would have transferred her sooner, well before her hospitalization.
I activated our LTC insurance policy when Clare was admitted to her assisted living facility in 2013. She was discharged from that facility in 2015. During that time—at those admissions or transfers—had any administrator, social worker, or nurse ever mentioned that I should check to see if I had that clause in my contract, or had the hospital social worker, NH administrator, or NH social worker mentioned something to me before Clare was admitted to the NH, I would have made a different decision that would have saved me thousands of dollars.
Whenever an ALC resident is hospitalized and officially withdrawn from an ALF for placement in a NH, a cautionary reminder from ALF administrators to check one’s LTC policy would always be very helpful. However, based upon my experience, the primary responsibility for this cautionary LTC policy reminder rests with hospital social workers. Once social workers indicate that a hospitalized loved one will not be discharged back to the ALF and must be discharged to a NH, a decision often made within 24 hours of admission, social workers should tell caregivers to carefully check to see if their LTC policies have that tax qualification clause. 
Indeed it may be beneficial for all appropriate personnel at ALFs and NHs—administrators, social workers, head nurses—to become more knowledgeable about this clause and similar clauses in LTC insurance policies, so they can advise caregivers properly. These kinds of life events are not routine for anyone except those who work in this field, and stressed caregivers and family members need as much guidance as they can get in these emotionally, medically, and legally complex situations.
Since many people in ALFs eventually are discharged to NHs, it would be fair to expect assisted living personnel to at least know about the difference between tax qualified vs non-qualified LTC insurance policies. Especially in the instances of care transfers, it would be fair to expect that this caution be given to caregivers by NH personnel advising on and arranging placement.
It may be inevitable to avoid these kinds of clauses in some instances, for example, if a caregiver’s loved one needs to remain hospitalized beyond 3 days due to medical reasons, NH room availability, caregiver preferences, or a variety of other reasons. However, if caregivers are told to check their LTC policy, at least there will be no billing surprises after NH placement begins.
Assisted living and NH personnel who do not provide this caution may end up leaving unsuspecting caregivers with bills for thousands of dollars that may have easily been avoided. I found the following to be a helpful resource and well worth sharing with others who are or could soon be dealing with these types of situations: http://www.uscare.com/taxed.html.
_____________________________________________________________

Dr Vann is a frequent writer in caregiver magazines, medical journals, and in major newspapers, including The Huffington Post. After his wife, Clare, was diagnosed with early onset Alzheimer’s disease, Dr Vann made it a point to increase public awareness of Alzheimer’s and to help fellow caregivers. You can read his other pieces at www.allansvann.blogspot.com. If you would like Dr Vann to respond to questions or comments about this article, please email him directly at acvann@optonline.net.  

Annals of Long -Term Care.  March 1, 2017.  Access online only at:
http://www.managedhealthcareconnect.com/blog/cautioning-caregivers-about-long-term-care-insurance
or at: http://www.managedhealthcareconnect.com/blogger/allan-s-vann-edd

Thursday, November 10, 2016

Reporting Deaths of Individuals with Alzheimer's Disease

Editorial

Reporting Deaths of Individuals with Alzheimer’s Disease

After a 10-year struggle with early-onset Alzheimer’s disease (AD), my wife recently passed away in a nursing home, 1 month before her 70th birthday. Shortly afterwards, I received a copy of her death certificate, and I was stunned.

When I read Section 30, part IA of Clare’s death certificate, where a doctor is supposed to note the immediate cause of death, the doctor wrote “cardiac arrest.” That came as no surprise because Clare had had heart problems for more than 20 years.

It was when I read Section 30, part II of Clare’s death certificate that I was absolutely shocked.  That section is where a doctor is to note “Other significant conditions leading to death but not related to cause listed in part IA.”  The doctor left that space blank.  That is what stunned me ... and angered me.  The doctor made absolutely no mention of Clare’s AD.

The word, “Alzheimer’s” appears nowhere on Clare’s death certificate.  Several months after my beloved wife’s death, I am still having trouble wrapping my mind around that.

In 2014, relying upon two studies conducted with partial funding from the National Institute on Aging (NIA), National Institutes of Health (NIH), the NIA concluded that, “Underreporting of Alzheimer’s as a cause of death on death certificates is a well-known phenomenon. Some people with the disease never receive a diagnosis. Many others have dementia-related conditions, such as aspiration pneumonia, listed as the primary cause of death while the underlying cause, Alzheimer’s, is never reported.” 1

According to Bryan James, the lead researcher on one of the studies, “Alzheimer’s causes the brain to decline over time.  At first, it affects those parts of the brain responsible for thinking and memory.  Eventually, it can lead to problems with feeding and swallowing.  This puts people at risk for poor nutrition, dehydration, and infection.  At that stage, it can lead to fatal conditions such as pneumonia and heart failure.” 2

When I asked Clare’s nursing home doctor why he did not list AD as a “significant condition” leading to her death but not related to the immediate cause of death, cardiac arrest, he said that he could not be sure that AD played any role because of Clare’s previous heart history.

Hello?  If Clare never had AD, she would have lived a much healthier life style, especially in these last few years.  All else being equal, Clare would have been exercising daily, as she had been doing up until her last few years, and she would have been eating more nutritiously and sleeping better.  Her heart problems had been under control for years with medication.

If Clare never had AD, she may never have needed powerful medication to help control the anxiety she developed as a consequence of her AD in her last 2 years ... medication that came with specific warnings of higher incidence of death when taken by people with dementia but medication she was given anyway because nothing else would calm her down.  According to the Centers for Disease Control and Prevention (CDC), in 2013, the latest year for which they have complete data, 93,541 Americans died of AD, making it the sixth leading cause of death in this country. The CDC bases annual death statistics solely upon causes of death listed on death certificates, so when they collect 2016 data, Clare’s death will be counted solely as a death due to heart disease, not a death due, at least in part, to AD.

It is as if, medically, Clare’s last 10 years never existed. Clare spent 10 years battling AD, but there will never be any official documentation that she ever had this horrible disease.  That just does not sit right with me.

I accept that, even if Clare never had AD, she might still have died of cardiac arrest that same April morning, but I also know that, if Clare had not AD these past 10 years, she would have had significantly better health, would have had significantly better quality of life, and might have lived significantly longer.  

NIH funding to help find effective treatment for people with AD, let alone ways to prevent or cure it, might be significantly higher were the numbers of deaths due to AD reported more accurately.  One of those two 2014 NIA studies suggested that deaths due to AD are so underreported that AD may really be the third leading cause of death in this country, behind heart disease and cancer. 1  Perhaps NIH would fund AD research at the same high levels as heart disease and cancer research if all those underreported deaths were properly recorded as deaths due, at least in part, to AD.

Doctors should write “Alzheimer’s” on death certificates for all who die while in the end stages of AD.  Even if not listed as the immediate cause, AD should certainly be listed as one of those “other significant conditions leading to death.” Researcher James noted, “Trying to identify a single cause of death may not reflect the reality of dying for many older people, where multiple health issues contribute and lead to a cascade of deterioration of health and function that leads to death.” 2

It is difficult enough for caregivers to watch their loved ones suffer a slow and inevitable death from AD, but then to discover that their loved ones will not even be counted among those who died at least in part from AD simply because a doctor did not feel it was important to note this “other significant condition” on a death certificate ... well, that is just not right.

Allan S. Vann, EdD

ACKNOWLEDGMENTS
Allan S. Vann writes frequently about Alzheimer’s disease. His articles published in caregiver magazines, medical journals, and in major newspapers may be read at http:// www.allansvann.blogspot.com. His columns for The Huffington Post may be accessed at http://www. huffingtonpost.com/allan-s-vann.
Conflict of Interest: None.
Author Contributions: Allan S. Vann is sole author.
Sponsor’s Role: None.

REFERENCES
1. National Institute on Aging, National Institutes of Health, U.S. Department of Health and Human Services.  Number of Alzheimer’s Deaths Found to Be Underreported. 2014 [on-line].  Available at https://www.nia.nih.gov/ research/announcements/2014/05/number-alzheimers-deaths-found-be-underreported.  Accessed July 21, 2016.

2. McMillen M. Alzheimer’s Kills More Than Expected. WebMD Health News, 2014 [on-line].  Available at http://www.webmd.com/alzheimers/news/ 20140305/study-alzheimers-more-deaths.  Accessed July 21, 2016.
3. Centers for Disease Control and Health Prevention, National Center for Health Statistics.  Number of Deaths for Leading Causes of Death.  2016 [online]. Available at http://www.cdc.gov.nchs/fastats/deaths.htm.  Accessed July 21, 2016.



JAGS 2016
© 2016, Copyright the Authors
Journal compilation © 2016, The American Geriatrics Society


Journal of the American Geriatrics Society.  December, 2016, Vol. 64, No. 12, pp. 2419-2420. Access at: http://onlinelibrary.wiley.com/doi/10.1111/jgs.14555/full.

(Published online on 11/8/16 in advance of print publication. Access at:  http://onlinelibrary.wiley.com/journal/10.1111/(ISSN)1532-5415/earlyview.)





Friday, October 30, 2015

Alzheimer's Caregivers Need Caring Too



It was 2007 when I observed my wife’s first symptoms of Alzheimer’s disease (AD).  In 2009, Clare was officially diagnosed with early or young onset AD and by 2010 Clare’s decline had progressed to the point where I could no longer leave her alone.  I became her 24/7 caregiver.  Sometime in 2011, however, I realized that I needed some respite time.  Initially I enrolled Clare in a day care program for 4 hours a day, once day a week, but eventually that grew to 22 hours of day care each week.  Other than those 22 hours, I was with Clare for almost every second of every day, and all of my needs were placed on the proverbial back burner. 

Clare was my #1 priority and anything I needed or wanted to do for myself that couldn’t get done during those hours of respite time just didn’t get done.  When Clare’s needs were such that I had to place her in the dementia unit of an assisted living facility (ALF) in September, 2013, I slowly but surely morphed from 24/7 caregiver to 24/7 advocate.  Clare’s ALF is now responsible for Clare’s activities of daily living except when she accompanies me outside of the ALF, so I no longer view my role mainly as her caregiver.  I now see my role mainly as Clare’s advocate, making sure that she is receiving the best possible care in her ALF.

Clare remains my #1 priority.  However, unlike those years when I was her 24/7 caregiver, I am now able to do almost anything I want or need to do each day.  The daily time I spend with Clare remains sacrosanct, unless I am not home and unable to visit with Clare.  (I have recently started taking occasional weeklong trips to visit our son and family in Michigan.)  But whether home or away, I am now able to take much better care of myself in ways I simply could not do before.  Daily advocacy has its stress, but nothing like the stress of daily caregiving.

Unfortunately, too many caregivers often sacrifice their own care when they are responsible for a loved one with Alzheimer’s.  I know that was true of me, and I know that was true of everyone else in my Alzheimer’s spouse support group. 

Caregivers give up personal care
Once I could not leave Clare alone anymore, golf was one of the first things that went out the window.  Our daughter volunteered to be with Clare while I went golfing on the weekend, but I felt guilty being away from home for so long.  I also knew that Clare wanted to be with me, not our daughter, so I couldn’t even enjoy my golf.  After going twice, I thanked our daughter but I put my golf clubs away.  Other hobbies and interests also ended once I had to be with Clare all the time.

Every caregiver gives up some favorite activities as the price of being a full-time caregiver.  Even simple “home activities” often go out the window.  For example, at a certain point I could not do anything at home by myself if Clare was awake.  She would sit and watch TV all day long, and if I weren’t sitting next to her she would get up, find me, and hover next to me until I joined her on the couch. 

It’s a lot more, though, than just giving up favorite activities or hobbies.  Many caregivers put off their own health needs if they interfere with their caregiving responsibilities.   In my situation, I had severe left hip and leg pain and had to walk with a cane for nearly a year.  I was walking so “lopsided” to try to reduce the hip pain that my left knee was aching and my leg was swollen.   However, I waited to deal with this pain until after Clare was admitted to her ALF so I knew that she would be well cared for if I needed hospitalization.  Unfortunately, I had put off dealing with my hip pain for so long that by the time I went to the orthopedic surgeon, my left hip was bone on bone.  All the cartilage was gone and I needed complete hip replacement surgery, followed by rehabilitation therapy.  Some caregivers in my support group scheduled chemo sessions for cancer when their spouses were in day care programs, not because it was the best time for their chemo but because it was the only time their spouses would not be impacted. 

Caregivers are prone to experiencing personal health issues
All caregivers for loved ones with Alzheimer’s deal with many of the same issues, but not all are the same for everyone.  For some, their major stress may come from having to deal with a major personality change in their loved one.  A person with Alzheimer’s may suddenly become verbally abusive or physically aggressive, even trying to physically harm their caregivers.  For some caregivers, being asked the same question over and over and over again (I used to refer to this as Clare’s “groundhog day loop’), or constantly having to search their house for missing or misplaced objects, or the inability of their loved ones to follow even the simplest one-step direction are their major causes of daily stress.

For some caregivers, their major stress results from having to not only deal with Alzheimer’s, but also having to cope with their loved ones having complications arising from other diseases such as diabetes or Parkinson’s.  Just lifting a loved one into and out of a bed, chair, or sofa, let alone into or out of a wheelchair can become too difficult.  Trying to transport that person and helping that person and then having to then lift that wheelchair into and out of a car can become a major issue.  And for increasing numbers of caregivers, their greatest stressors come from the financial side of Alzheimer’s ... worries about how to pay for aides or companions to stay with their loved ones at home, or day care programs, let alone the high costs of long term assisted living or nursing home placements. 

Daily stress and/or anxiety and/or depression caused by these and other matters can be devastating to a caregiver’s health.  It has been estimated that as many as 40% of Alzheimer’s caregivers may be suffering from depression.  Many caregivers suddenly find themselves having to deal with the effects of high blood pressure, weight gain or loss due to newly developed poor eating habits, stress headaches, or difficulties sleeping.  And many caregivers simply find themselves in a continuous state of mental, physical, and emotional exhaustion at the end of every day. 

It is not unusual to learn that caregivers are spending some of their limited “respite time” in doctors’ offices to receive check-ups followed by medications for various ailments that are a direct result of the effects of their caregiving.  And it is also not unusual for caregivers to see a therapist, psychologist, or psychiatrist for help to get them through all of their daily anxiety and/or stress and/or depression.  Whether it is postponing treatment for a medical condition, having to take new medication, or engaging in some form of therapy, most caregivers find their health impacted by the daily care they provide for their loved ones.

How caregivers can take better care their own needs
I know of no ways to completely eliminate the daily stress that caregivers find themselves facing when placing the needs of their loved ones ahead of their own.   But there are some steps that caregivers can take to reduce some of their daily stress and increase possibilities for taking better care of themselves:

1. Find at least some respite time each week.  For me, initially, I found respite time by placing Clare in day care programs.  For others it is hiring part-time health aides or companions who stay with loved ones in their homes.  For some it is a dependence upon a trusted friend or relative to provide some weekly respite relief.  But some way, somehow, caregivers must find ways to provide themselves with at least some respite time to do what they need to do by themselves each week.  This is when caregivers can place their needs first for a few hours each week.  Once I placed Clare in her ALF, of course, respite time has become a non-issue for me.  I now have all the available time I need to take care of my own personal health needs, despite having Clare remain as my #1 priority.

2. Consider temporary week-long respite placements.  Many ALFs and other health or long term care facilities allow a person with Alzheimer’s to reside there for up to one week at a reasonable cost to provide temporary respite for caregivers.  Facilities may do this to entice caregivers into considering full-time residential placement there for their loved ones somewhere down the line, or simply to fill up empty bed space.  Regardless of the facility’s motive, if there is a suitable place near where you live that would give you a week all to yourself, then you should look into this as a possibility for respite.  I know caregivers who regularly take advantage of such programs to literally “get away” to visit friends or relatives and avoid daily caregiving responsibilities so they can “recharge their batteries.”

3. Pamper yourself at least once each week.  Some caregivers go for manicures and pedicures during respite time to get their minds temporarily off of caregiving, or go out to a movie theatre, or to a library or park to read a good book in peace and quiet without any distractions.  For me, writing articles for publication during my respite time enabled me to take care of many of my emotional needs.  Writing allows me to vent my emotions and feelings.  After completing each article, even if battling tears while writing, I feel better.  After my articles are published and I receive feedback from readers, it feels good to learn that I may be helping others through my writing.  To this day I still find emotional release through writing, and more and more I am enjoying my correspondence with fellow caregivers who comment on my articles.  Whatever works, all caregivers should try to find something that will reduce their stress on a regular basis.

4.  Engage in some physical activity on a regular basis.  Virtually all doctors recommend physical activity as a way to reduce stress.  Walking is as basic as it comes, and a daily walk or any regular exercise would probably help many caregivers with diet and sleep issues as well.  I was working out a few times a week while Clare was in day care programs until my hip/leg pain prevented me from doing so.  After my surgery and rehab I returned to working out on a regular basis.

5. Relaxation techniques help many caregivers.  Although I never tried these techniques, some caregivers report that they meditate for at least 15 minutes every day, or do tai chi or some other relaxation exercise to reduce their daily stress.  Anything  that is legal and helps a caregiver relax is probably helpful!

6.  Visit your doctor.  Caregivers feeling the effects of stress, anxiety, or depression ... if not eating well, not sleeping well, experiencing muscle pains or tightness, suffering from headaches, back aches, or feeling mentally, physically or emotionally drained each day ... must make time to see a doctor.  Caring for a person with Alzheimer’s can easily lead to health issues for caregivers.  A doctor may be able to suggest some diet, exercise, or treatment that caregivers can do during respite time or when loved ones are asleep.  Doctors may recommend over-the-counter or prescription medication, or the name of a helpful therapist.  At the very least, if not already doing so, caregivers should be sure to make time for an annual physical exam when blood pressure can be monitored.  An annual physical exam will also insure that caregivers have the opportunity, in a timely manner, to receive proper vaccinations and any additional testing that a doctor feels is needed.

The bottom line for caregivers
Most caregivers will always place the needs of their loved ones ahead of their own.  One would expect this to be true for caregivers in a loving relationship with the person who has AD, but this is also often true even for caregivers who did not have a particularly loving relationship with the person who has AD.  Those who resent having to spend time as caregivers still often place that person’s needs ahead of their own due to feelings of guilt, or from a sense of duty grounded in religious or ethical reasons outside the realm of love.


For whatever reason, caregivers placing the needs of a person with Alzheimer’s ahead of their own must find time to attend to their own needs as best they can.  Caregivers need to always be mindful that if they “go down,” who will be there to take care of their loved ones?  That is why all caregivers, whether loving or resentful, must also learn to care for their own needs.  Alzheimer’s caregivers need caring just as much as people with Alzheimer’s need caring.

Published in AFA Care Quarterly, Fall 2015, pp. 8-10.   Access at:
http://www.alzfdn.org/Publications/afa-care-quarterly/issues/AFA_Fall2015.pdf

Wednesday, April 29, 2015

From Caregiver to Advocate

 (Original submission, "Advocating for a Loved One in Assisted Living Facilities")

Morphing from Caregiver to Advocate
My wife, Clare, has Alzheimer’s disease and is midway through her second year in an Assisted Living Residence (ALR) that has mostly assisted living residents, but also has a separate lockdown unit for people like Clare.  Clare’s unit has separate hourly activity programming throughout the day, but residents from Clare’s unit are also sometimes brought to join non-dementia residents for special programs both on and off site. 

Because Clare’s unit is specifically designed for people with dementia, aides provide her with all of her medications at the proper times, she is helped with many of her Activities of Daily Living and is generally very well cared for from the time she wakes up until she goes to sleep at night.  I would rate Clare’s ALR as an A+ facility both in terms of programs and services provided on a daily basis, and in terms of caring personnel.  However, even in the best ALRs there will be days when one or more staff members fail to do their jobs properly, or facility management is not up to snuff, and this is when the role of the caregiver as an advocate can become crucial.

Even though I visit her daily, I now depend upon Clare’s ALR to take care of caregiver responsibilities.  I am more advocate than caregiver now to ensure that Clare receives the high quality of care she should have each day.  Fortunately, most of the time there is nothing to advocate for because all is well.  But when problems do arise, if I were not there to advocate on Clare’s behalf, change might not happen.  I may see Clare wearing the same clothing several days in a row, or personal hygiene issues that have been neglected, or there may be occasional food issues.  Fortunately, the ALR executive directors have been receptive to my occasional complaints and have taken action to swiftly remedy problems brought to their attention.  I have learned that there are several steps a caregiver-advocate can take to facilitate change when necessary:

A 5-step plan to bring problems to the attention of ALR administrators:
 1.  Determine whether the problem is a personal issue dealing with your loved one, or an overall ALR facility issue.  An example of a personal issue would be noticing that your loved one is not being dressed in clothing appropriate for that day’s weather.  A facility issue would be that a scheduled activity is not taking place.

2.  Try first to resolve the matter with a lower level administrator.  For example, notify the dementia unit director or the recreation director or the dining director of the problem you are trying to address.

3.  If the problem is initially resolved but then resurfaces, or is not resolved at all,
it is time to make an appointment with the facility manager in charge.  Top administrators are very busy people and they deserve the courtesy of a scheduled appointment.  Similarly, when making the appointment, indicate the problem that you want to discuss so the manager can be better prepared for your meeting.

4.  Write down what you want to say at your meeting.  Even if you don’t read what you wrote, you can refer to your notes if necessary to make sure you have stated the problem accurately.  Tell the top manager who you have already met with and what has already been done to try to resolve the problem, and exactly what you want the top administrator to do.

5.  After your meeting, follow up with either a thank-you note or email.  Should the problem continue, however, follow up with another note or email to indicate that the problem is continuing.

It is important to remain calm at all meetings with ALR administrators, and to be patient afterwards.  Screaming and shouting may allow a caregiver-advocate to vent emotions, but it often makes it difficult for administrators to be receptive to what you are asking them to do.  If a personal issue, the administrator may need a few days to resolve the problem.  If a facility issue, it may take several weeks because institutions are generally resistant to change. 

What you can expect
I have taken these same five steps at Clare’s ALR and have met with success on every occasion.  That does not mean that problems which have been resolved won’t resurface again.  But it does mean that Clare’s care is better and my visits to her facility are more enjoyable because of my advocacy.  Top administrators will usually do all that they can to ensure not having to meet repeatedly with caregiver-advocates over the same matters.  ALR administrators want happy and satisfied caregiver-advocates who will speak well of their ALR to others.  Positive word-of-mouth is one of the best ways for an ALR to continue to grow its potential new client list. 

If you want a problem addressed and your meetings with administrators do not lead to positive change within a reasonable amount of time, ask to meet again with that same administrator.  If necessary, continue meeting until the problem is addressed properly.  One characteristic that separates effective from ineffective advocates is persistence.   As a last resort, ask to see if the facility has an “ombudsman” who may be able to help resolve problems.

But whatever you do, do not give up.  Just as you did when you were a 24/7 caregiver, you must now do all you can for your loved one as a 24/7 advocate.  Regardless of how wonderful that ALR ... or nursing home or hospice setting ... may be, no one will care about your loved one as much as you do.  So advocate relentlessly!

Published in Today's Caregiver.   March-April, 2015.  Access at:  www.caregiver.com/magazine/digital/caregiver marapr15/#/?=26.