Tips for Improving Caregiver Communication In ALFs and NHs

When making assisted living facility (ALF) and nursing home (NH) placements for loved ones, families relinquish their roles as primary caregivers, entrusting that role to institutional staff.  Staff must realize, however, that some family caregivers will still remain actively involved with their loved one’s care.

The last thing an ALF/NH administrator wants to hear is how his or her facility is developing a reputation as one where caregiver concerns about their loved ones are ignored by an uncaring staff. This is a sure way for bad PR to raise its ugly face in community discussions as well as possibly lead to negative facility reviews online. 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 caregiver communications in a timely fashion. All staff must be on mission, not just most staff.

One of the institution’s goals should always be to provide as much appropriate information to caregivers as possible in a timely manner. Caregivers should always be informed whenever there are significant changes in their loved one’s health, behavior, or routine practices. In addition, should there be a problem, inform the concerned caregiver immediately—don’t wait for either the problem to escalate or for the caregiver to find out before being informed. Caregivers should also be informed should there be a significant program or staffing change.

Below are some detailed examples of and strategies for effective communication.

Report on resident/patient behaviors

Family caregivers should be informed whenever there are significant changes in a resident’s daily routines, health, or behavior. For example, I can recall when I noted significant changes in my wife’s sleeping and eating habits. When I brought my concerns to the attention of administrators, I was told that those habits had changed several weeks ago. Excuse me? Why wasn’t I informed of those changes instead of being left to discover them by myself?

One easy way for supervisors to communicate effectively with concerned caregivers may be to do something similar to what many teachers do for concerned parents. Many teachers send home a weekly check-off sheet noting relative behaviors; the teacher places a check mark or “x” in each box to indicate satisfactory or unsatisfactory progress. In a matter of a few seconds, the teacher can briefly communicate with parents, who can then follow up if more information is desired. ALF/NH supervisors could issue similar brief weekly check-off forms for caregivers who want to be kept informed about changes in sleeping, eating, socializing habits, or one or two other areas.

Hold informal get-togethers with family caregivers

Provide coffee and cookies and invite all concerned caregivers to meet with you and your top administrative staff two or three times each year. Such settings allow you to share information about significant changes that are coming or have recently been implemented. These do not have to be lengthy meetings, just long enough for you to inform caregivers, highlight institutional or staff accomplishments, listen to any suggestions for change, and receive valuable feedback on existing practices. 

Announce personnel and program changes

Family caregivers should always be informed whenever there are significant changes in personnel working with their loved ones. I often saw new faces in my wife’s dementia unit, but I was never told about those changes and never given the names of new personnel, making it much more difficult for me to discuss concerns with superiors. Similarly, program time changes often affected my ability to visit with my wife; a simple heads-up about a time change in programs would have enabled me to avoid any problems. Obviously, advance notice cannot always be given. However, very often, advance notice can easily be given, it just isn’t done.

Issue an informative, monthly newsletter

ALFs and NHs routinely provide monthly calendars of events and daily activities for their dementia residents, but few provide names of staff members or phone numbers/email addresses for administrative staff, which would help to facilitate communication with concerned caregivers. A monthly newsletter could also highlight differences in institutional practice for dementia residents as compared with other residents. For example, for the entire first year my wife was in her ALF, I would see the daily menu posted in the ALF dining room and assumed my wife was given those same meal choices each day. Only through observation at meal times did I discover that dementia residents didn’t choose their meals as did other residents. Any practice in the dementia unit—or other units—that is at variance with overall ALF practices could be clearly stated in such a newsletter, along with other helpful information for caregivers to know.

Published in Annals of Long-Term Care, April 20, 2017.  Access online only at:

http://www.managedhealthcareconnect.com/blog/tips-improving-caregiver-communication-alfs-and-nhs

Inspirational Thoughts for Alzheimer’s Caregivers, Widows, and Widowers

                                        

It’s now been one year since the death of my wife, Clare, after her ten year struggle with Alzheimer’s disease (AD).  As an AD spouse for ten years, I experienced more days of sadness and grief than I can count.  On some days, my sadness led to severe depression.  I wanted to continue living so I could be with my children and grandchildren, as well as with special relatives and friends, but at the same time I questioned how I could ever again find happiness again similar to what I had experienced with Clare.  On some days I literally did not get out of bed because I was so depressed.  I felt married and widowed at the same time those last few years as Clare’s AD worsened to where she no longer knew my name, or that I was her husband.

There were several inspirational thoughts that keep me afloat during my darkest days as a caregiver, and some of these thoughts were extremely helpful as I dealt with the sadness, grief, and tremendous feelings of loss that I experienced for many months after Clare was gone.  I present them here in the hope that one or more of these inspirational thoughts may also be helpful to you.

For many months I kept singing along to two Katy Perry songs ... “Roar” and “By the Grace of God.”  On my worst days I sang them aloud, over and over and over again, shouting more than singing, both at home and in my car.  In “Roar,” ¹ Perry sings about having “the eye of the tiger, a fighter,” and that she is “a “champion.”   I wanted to feel like a champion.  I wanted to feel in control of my life again, and feel that I was going to come back from my despair and depression. 

In “By the Grace of God,” ² Perry sings about how, after a love break-up, she finds herself lying on her bathroom floor.  She sings, “I picked myself back up, I knew I had to stay, I put one foot in front of the other, I looked in the mirror and decided to stay.”  She also sang about how “the truth was like swallowing sand,” a fairly good description of how I felt on some days knowing that I was losing Clare more and more each day and soon would be widowed ... and how I felt after I had to face the reality that she was now gone forever.  Sadly, the only certainty with AD is that death is inevitable ... there are no AD survivors.

There were many other phrases in "By the Grace of God" that I related to ... lines such as "Running on empty, so out of gas" and "Found I wasn't so tough."  But that song also had the line, "I am not giving up."  Louder and louder, over and over again, I would shout out that song ... and it helped me.  A lot.

Something else that helped me a lot was re-reading the “Serenity Prayer” ³ that I keep posted in my home office ... “God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”  These words reminded me that I had to accept the reality that Clare was dying and there was absolutely nothing I could do to change that reality.  All I could do was make sure that Clare was receiving the best care possible and was as happy as possible. 

Those same words were just as valuable after I lost Clare ... I had to accept that she was gone from my life, but also accept the reality that I needed to move on with my new life as a widower.  I also knew I had to accept the fact that I now had to make some important decisions in my life and not dwell on what might have been or could have been.  I had to focus on what I needed to do in order to give myself the best opportunity to live a reasonably happy and healthy life as a widower.

I also came across some very wise words from Swiss psychiatrist Elisabeth Kubler-Ross, who wrote this about grief: “The reality is that you will grieve forever.  You will not ‘get over’ the loss of a loved one; you will learn to live with it.  You will heal and you will rebuild yourself around the loss you have suffered.  You will be whole again but you will never be the same.  Nor should you be the same nor would you want to.” ⁴

And that brings me to the last inspirational thought I want to share, words that led to my “Aha” moment.  I no longer remember where I read these words or who wrote them, but the author said that when you lose a loved one, instead of looking back with sadness at your loss you should think instead about how fortunate you were to have had your loved one in your life for all of those years. 

When I read those words, I literally looked at a picture of Clare and cried ... but I also smiled, recognizing how incredibly lucky I was to have been with Clare for all those years, and how instead of mourning her loss each day I should feel incredibly happy and lucky that I shared 51 years with her.  I know that I will grieve forever, but each month I am making progress in learning how to live with that grief.

  

These inspirational thoughts continue to keep me going even now.  I sincerely hope that one or more of these thoughts may also bring solace to others.  A caregiver watching a loved one die of a degenerative disease such as Alzheimer’s ... a disease that is without any hope of “remission” or “survival” ... cannot avoid deep emotional pain and anticipatory grief.  An Alzheimer’s widow or widower may find that pain and grief remaining for a long time after the death of a loved one. 

But if one can find some comfort in the words of others, the path to moving on with one’s life during and after caring for a loved one with Alzheimer’s may be somewhat easier.  I know it was that way for me.

1   http://www.katyperry.com/songs/roarlyrics/

2   http://www.katyperry.com/songs/grace-god/

3   http://www.lords-prayer-words.com/famous_prayers/god_grant_me_the_serenity.html

4  https://www.goodreads.com/author/quotes/1506.Elisabeth_K_bler_Ross

Published in AFA Care Quarterly, Spring, 2017, pp. 8-9.  NOTE:  This issue has a wedding picture of Clare and me on its cover, along with another picture of us in happier times, and includes several more pictures of Clare and me alongside my article.  This issue can be accessed online at:  http://www.alzfdn.org/Publications/afa-care-quarterly/

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.

Access online only at: http://www.caregiver.com/magazine/digital/caregiver_jan_feb17/8B998B3E5DB3BD1337AC6BF4C9011

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:

http://us4.campaign-archive1.com/?u=3a9dceeae152c6cd205d8a038&id=e59b135b0f&e=[UNIQID]

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: 

http://www.caregiver.com/channels/alz/articles/alzheimers%20_21st_cca.htm?utm_source=Caregiver+Newsletter&utm_campaign=2f5dfbe254-Caregiver_Newsletter_3_14_17&utm_medium=email&utm_term=0_8c5d5e6a5e-2f5dfbe254-94148877&mc_cid=2f5dfbe254&mc_eid=32ac13d245

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

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. ³  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.)