Help Alzheimer's Patients and Caregivers With Online Resources

(Originally titled, "Online Resources for Alzheimer's Caregivers.")

One common gripe of caregivers for loved ones with Alzheimer’s Disease (AD) is the lack of communication from their doctors, especially at or shortly after the office visit when a diagnosis of probable AD is issued.  It is in the period immediately following an AD diagnosis when caregivers and patients have many questions and the most need for accurate helpful information.  Doctors should be providing their AD patients and caregivers with two kinds of information ... medical and non-medical.

First, doctors should inform patients and caregivers about what to expect medically as a result of an AD diagnosis.  They need to explain that whereas no two people with AD necessarily follow the same pattern of decline, some common symptoms and behaviors can be expected as the disease progresses.  Doctors should mention that those with AD may decline extremely quickly over a period of just a few years, or slowly over the course of as many years, but that AD is a terminal disease with no effective means of treatment ... and with no cure.  Doctors should present information on the current medication available, but must be careful to note that such medications have only proved effective in slowing down the rate of decline for a few months to perhaps a year or two for some people with AD. ^1.  Doctors should also present information on clinical trial options. 

 However, just as important as this medical information, doctors should also be informing patients and caregivers about helpful non-medical information.  Doctors should discuss the importance of joining support groups to find both emotional support and learn more helpful information from others in similar situations.  Doctors should be informing patients and caregivers about the importance of end of life planning.   And doctors should be informing patients and caregivers about online sources of information.

Currently, the vast majority of AD caregivers I am in contact with report that their doctors never mentioned anything about joining AD caregiver support groups, and never told them where to go or whom to contact to learn more about support groups.  This practice must change.  Increasing numbers of technologically savvy adults will be diagnosed with AD in the years ahead.  Doctors should routinely be suggesting internet sites they can consult for information, help and support.  This is especially important for doctors serving patients and caregivers in areas of our country not well served by support groups.  Online support groups are the next best option in such situations and may even prove superior to ineffective weekly groups, or support groups that only meet bi-weekly or monthly.

I recognize that caregivers can go online by themselves to check out AD sites.  However, one problem in the internet age is the lack of quality control among online sites.  Given their knowledge about AD and what caregivers need to know, doctors can easily screen some internet sites and suggest several helpful websites that can provide immediate guidance for their newly diagnosed AD patients and their caregivers.  Doctors who update their familiarity with internet sites even once a year for an hour or two to help their patients and caregivers would not be incurring an overly time-consuming burden. 

Following are sites that I have found most helpful in my role as an AD caregiver.  I visit some sites on a daily basis, some only occasionally, and some only when seeking specific information or the answer to a specific question.  Some sites automatically send daily or weekly updates to my email inbox.  Whereas other caregivers may suggest sites not listed here, this listing can certainly serve as a starting point for doctors who want to better inform both their patients and caregivers. 

- My favorite site for interacting with others in my situation … spouses of people with AD … is at www.thealzheimerspouse.com.  This site allows me to have a support group available to me on a multitude of distinct topics, 24/7.  The site is coordinated by Joan Gershman, a caregiver whose husband has AD (and diabetes and Parkinson’s).  The insight gained through Joan’s blog postings is justification enough to visit frequently.  However, in addition to the blogs, her site provides very comprehensive and helpful information just a click away.  The site’s message boards allow caregivers to post questions and receive answers from others dealing with similar issues.  Although I have been meeting weekly with fellow spouse caregivers for more than four years, I still check this website each day to read postings and comments.  I also start a new message board “thread” seeking the advice of other spouse caregivers when I want to know how others in my situation have handled a specific issue.  There is a lot of “collective wisdom” from other spouse caregivers on those message boards.  I can envision this site being most valuable for people not living in areas where they can participate in good weekly caregiver support groups.  In my opinion, this is simply the single best internet site for spouse caregivers!

- My favorite source for obtaining daily information about current research and newly released studies, as well as links to other helpful resources, is the Alzheimer’s Daily News which comes directly to my email inbox each day.  A publication of the Ageless Design Research Foundation, one can subscribe to this source by going to www.agelessdesign.com or to www.alznews.org.  Each newsletter has a brief description of a recently published study or other AD information with a link to follow up to read more if interested, as well as a link to a support group (that I do not participate in) and a store selling AD products.

- One can also sign up for a daily or weekly Alzheimer’s Newsletter reporting on recent research studies at www.medicalnewstoday.com.  I often find myself checking further on items in my daily/weekly newsletter from this source.  Often there will be the same news articles as in Alzheimer’s Daily News, but sometimes I find other news articles worthy of follow-up.

- The national websites of both the Alzheimer’s Association and Alzheimer’s Foundation of America have lots of helpful information and can refer one to local resources and support groups as well.  In fact, when I was dissatisfied with support groups available to me through the Alzheimer’s Association, my visit to the Alzheimer’s Foundation website led me to learn about LIAF, the Long Island Alzheimer’s Foundation where I found weekly support groups designed exclusively for spouse caregivers ... and support groups for those in early to moderate stages of AD for my wife to attend.  Each national site also maintains online support groups, but I have not found them anywhere near as helpful as the online support group at TheAlzheimerSpouse.com.  Go to www.alz.org for the Alzheimer’s Association website, or to www.alzfdn.org  for the Alzheimer’s Foundation of America website.

- USAgainstAlzheimers, sometimes referred to as USA2, is a national organization that engages in “public advocacy, federal relations, grassroots activity and voter relations” on behalf of those with AD and their caregivers.  They also have a Political Action Committee (PAC) to support legislators and legislation, an activist network, and an organizational network whose goal is to end Alzheimer’s by the year 2020. Their chairman and co-founder is a member of the National Alzheimer’s Project Act (NAPA) Advisory Council.  Their website also posts stories from caregivers and other helpful information, blogs, news, and activist information.  Go to www.usagainstalzheimer’s.com.

- the National Institute on Aging’s Alzheimer’s Disease Education and Referral Center (ADEAR) provides complete information on all AD clinical trials and all Alzheimer’s Disease Research Centers.  This is the government center for AD information can be accessed at www.nia.nih.gov/Alzheimers.  There is also a lot of AD information available from the National Institutes of Health.  Their site provides such helpful information on stages of AD, treatment options, clinical trials, etc. at www.nlm.nih.gov/medlineplus.  The most recent government site dealing with AD can now be found at www.alzheimer’s .gov.  For those whose loved ones have only recently been diagnosed, this seems to be an extremely comprehensive site that should be checked out for further information and links to other sites that will prove helpful.

- New York University’s Fisher Center for Alzheimer’s Research Foundation issues a monthly newsletter that one can sign up for at www.alzinfo.org.  This NYU site also has a link to “Clinical Stages of Alzheimer’s,” that I have found to be the single best timeline to clearly alert caregivers about what they should expect as their loved one declines through the early, moderate, and severe stages of AD.

- There is a great deal of AD information at www.mayoclinic.com, including valuable information about AD symptoms, stages, treatments, etc.  One can also sign up for their Alzheimer’s Caring Newsletter to come directly into one’s email inbox.  In addition, a Mayo Clinic health education outreach coordinator maintains an Alzheimer’s blog site that encourages caregiver to post comments.  This site is for all caregivers, not just for spouse caregivers.  For reasons that continue to mystify me, the site is incredibly difficult to locate from their main site and from their AD information pages.  But one can access the blog site by going directly to: www.mayoclinic.com/health/caregiving/MY00395/TAB=expertblog.

- The Johns Hopkins website has lots of helpful information similar to that which is found at the Mayo Clinic site.  They also issue a Health Alert on Memory that can go directly into your email inbox several times each month.  To access their information about causes, symptoms, treatment of AD, etc. one can go to their main website at www.hopkinsmedicine.org.  To sign up for their AD health alert newsletter, one can go to www.johnshopkinshealthalerts.com.

- The University of California, San Diego Alzheimer’s Disease Cooperative Study issues a monthly newsletter with information about recent research sponsored by the National Institute on Aging  (NIA).  In cooperation with the University of California, San Diego, their newsletter also has information on new AD clinical trials and ongoing AD research, as well as links to other helpful sites.  One can access all of this information by going to www.adcs.org.

- At the Alzheimer Research Forum, one can subscribe to a weekly newsletter about current research articles and studies.  Go to www.alzforum.org.

- One reliable information site for many health topics is “webmd” and one can sign up for their AD newsletters at www.webmd.com/alzheimers/news.

- A comprehensive site for all science topics is at www.sciencedaily.com.  This site provides the latest news is many different areas of science ... nature, engineering, etc. along with health topics.  One can sign up for their free AD newsletter to come directly into your inbox with the latest news about AD research.

- Information about helping the elderly with AD, along with message boards for posting comments (and a site looking to provide additional resources and help somewhere down the line) can be found at www.caring.com.

- A website coordinated by Cornell Medical College to help caregivers prepare a safe home environment for someone with Alzheimer’s can be found at www.ThisCaringHome.org.

- Another website that posts newspaper and journal articles dealing with major health issues is My Healthy Today.  You can sign up for their free monthly Alzheimer’s Disease newsletter to come directly into your inbox each month at www.myhealthytoday.com.

Finally, I would respectfully recommend that doctors take a look at my own website ... begun in August, 2013, at the specific request of several medical journal editors and national AD organizations ... www.allansvann.blogspot.com.  I would suggest that some doctors could learn something from my articles to gain the perspective of an AD caregiver, and may wish to also consider recommending my site to their patients and caregivers for more information.

1. A.S. Vann.  “Current Alzheimer’s Medications: Effective Treatments or Expensive Bottles of Hope?”  Journal of the American Medical Directors Association.  August, 2013, Vol. 14, No. 7, pp. 525-526.

A severely edited version of this article was published in Caring for the Ages, the monthly newsletter of the American Medical Directors Association.  January, 2014.  Vol. 15, No. 1, P. 11.  Online only.

My New Year's "Wish List"for a National Alzheimer's Agenda

(Note:  This guest column is an abbreviated version of a longer feature article, "A Caregiver's Wish List for a National Alzheimer's Agenda," published online in December, 2013 and to be published in print in the January, 2014 issue of the American Journal of Alzheimer's Disease and Other Dementias.)


As a caregiver for my wife, diagnosed with Alzheimer’s Disease (AD) in 2009 at the age of 63, here’s my brief “wish list” for a national Alzheimer’s agenda. 

Funding changes:
The federal government must greatly increase funding for basic research, not just through NIH funded studies, but also for states to disburse to local research labs working on neurodegenerative diseases.  Funding should also subsidize clinical trials for potentially new AD medications, but medication labels must note that medication was proven effective only for the number of weeks that the trial lasted.

States should also provide grants to local AD organizations (such as the Long Island Alzheimer’s Foundation, where I live) that help those with AD and their caregivers.  Assisted living facilities, non-profit social organizations, hospitals, and nursing homes should also receive grants.  Money can be used to create more caregiver support groups, day care and respite programs, provide companion services and home health aides, and support ongoing training programs for AD healthcare personnel.

Changes in doctor/patient/caregiver protocols:
Doctors must pay more attention to what caregivers tell them about their loved ones during office visits!  We already have research supporting the effectiveness of screening for AD symptoms through the AD8, a 2-minute questionnaire given to caregivers.  Such tests should be routinely administered to any caregivers who express concerns about a loved one ... regardless of whether that loved one is symptomatic of dementia or not when in the doctor’s presence.  

Upon issuing an AD diagnosis, doctors should be required to inform patients and their caregivers about caregiver support groups and should provide a brief handout explaining the stages of the degenerative progression of AD over time.  Too many caregivers are unaware of support groups and how they can be helpful.  Similarly,  too many caregivers are not aware of how quickly one with AD can decline and how important it is to make end-of-life decisions sooner rather than later.

Doctors should also be required to report every AD diagnosis to their state Department of Motor Vehicles, with surrender of driver’s licenses mandated no later than one year after diagnosis.  By definition, an AD diagnosis implies mental impairment that will, eventually, impact one’s ability to drive a vehicle safely.  A person with AD who continues to drive long after diagnosis potentially places that person, anyone else inside that person’s vehicle, and bystanders in harm’s way unnecessarily.

Hearing caregiver voices:

Local, state, and national AD advisory panels should be required to seek more input directly from 24/7 caregivers.  Unless someone lives 24/7 with a loved one who has AD, one cannot possibly have the remotest idea of what an AD caregiver’s life is like.  The National Alzheimer's Project Act (NAPA), for example, only has one 24/7 caregiver on its Advisory Panel.  Without hearing more caregiver voices, NAPA is not as inclusive as it should be.

The need for action ... now:

It is now more than 3 years since NAPA was created, yet NIH continues to fund AD research near the same relatively low levels as before.  Neither NAPA recommendations nor proposed Senate and House bills for increased funding have resulted in legislation to substantially increase federal funding.  We must have the political will as a nation to make tough choices in difficult economic times. The time for our country to deal with the human and economic burdens of Alzheimer’s is now.

Published as a guest column on the "by2020 blog" site of USAGainstAlzheimers, on January 10, 2014.  Access at: www.usagainstalzheimers.org/blog.

Alzheimer's cure must be found

(Originally submitted as, Let’s Make New York the Center for Alzheimer’s Research.  After submission, I was asked to add a second paragraph to personalize the article, and Newsday edited down to its published format.)

 

More than 300,000 of our nation’s estimated 5 million people with Alzheimer’s disease live in New York.   By 2025, it is estimated that 350,000 New Yorkers will be living with Alzheimer’s.   Already costing our nation more than $200 billion a year ... costs expected to exceed $1 trillion by 2050 ... Alzheimer’s has no effective means of prevention, treatment, or cure and is the 6^th leading cause of death in this country.  Between 2000-2010, deaths due to Alzheimer’s increased 68%.

In 2009, a month after turning 63, my wife, Clare, was diagnosed with early/young onset Alzheimer’s disease.  By that time she had already been dealing with Alzheimer’s symptoms for three years ... asking me the same questions over and over, losing personal objects, misplacing things, starting sentences but unable to complete them, getting lost while driving locally, no longer enjoying hobbies of previous interest, etc. As her Alzheimer’s worsened over time and she grew increasingly dependent upon me, I needed respite time for myself.  Clare started attending social day care programs several times a week and that helped, but it eventually became apparent that as her 24/7 caregiver I could no longer provide the quality of care she needed ... nor could I get the time I needed for myself.  Clare now needed 24/7 supervision to be sure she was safe, she needed my assistance each morning to get washed and dressed, and each evening to get undressed and ready for bed at night.  She could no longer prepare meals by herself, hygiene was becoming an issue, she was getting more confused each passing week, and even supervising her daily morning and evening medication was becoming difficult.  I finally placed Clare in an assisted living facility this past September.  She is happy there and is in a safe and secure environment.  I visit her daily.  But Clare and I are two of the lucky people in this state and this country who purchased long term health care insurance when we retired.  Without that support, I’d have had to liquidate our assets over these past five years so Medicaid could foot the bills since many assisted living facilities on Long Island charge around $200 per day, or more, for people with Alzheimer’s.  Those costs add up very quickly ... $6000 each month, $72,000 each year ... and more.  New York will eventually go broke paying Medicaid costs for those with Alzheimer’s in assisted living facilities and nursing homes.  The same will happen in other states until we can find a way to effectively treat, prevent, or cure Alzheimer’s. 

We cannot depend upon our nation’s National Institutes of Health (NIH) for sufficient research funding to find a cure for Alzheimer’s.  NIH currently only funds Alzheimer’s research at half a billion dollars a year, as compared to yearly allocations of $3 billion for HIV/AIDS research and $6 billion for cancer research.

Congressman Steve Israel and Assemblyman Charles Lavine would both like to see increased federal funding, but they also recognize that we cannot count on that happening, especially now with federal sequestration budget limits in place.  Their solution is a $3 billion state bonding initiative similar to state bond issues that have made California this nation’s center for stem cell research, and Texas this nation’s center for cancer research.  Those bonding initiatives enabled California and Texas to attract top researchers to come to their states. 

New York already has in place some of the major “ingredients” to make an Alzheimer’s bonding initiative a success.  Three of our nation’s 29 Alzheimer’s Disease Research Centers are in New York City.  In addition, some of the finest research facilities in the nation are in New York, such as Long Island’s Cold Spring Harbor Laboratory, one of the world’s leading centers for genetic and neuroscience research.  One can only imagine the synergy of having New York’s world class institutions working cooperatively on Alzheimer’s research with sufficient funding.  Such a bonding initiative would also have the potential to create new jobs and attract even more world class researchers and scientists to New York.

In addition to research, a state bonding initiative could provide money for more programs to support those already dealing with Alzheimer’s, and their caregivers.  Grants to local non-profit organizations could provide more badly needed support groups and day care programs for those with Alzheimer’s and their caregivers.  Grants could provide more training for those who work each day with Alzheimer’s residents living in assisted living facilities and nursing homes.  

Congressman Israel and Assemblyman Lavine have made a serious proposal to specifically help those with Alzheimer’s living in New York, and all Americans dealing with Alzheimer’s.  Their bonding initiative merits serious consideration.  A $3 billion bond issue, spread out over 20-30 years, can make New York our nation’s center for Alzheimer’s research and innovation.  A bond issue could lead to new jobs, eventually save money that New York would otherwise  spend on Medicaid costs to care for people with Alzheimer’s, and provide programs to help those currently dealing with Alzheimer’s, and their caregivers.

New York ... our country’s center for Alzheimer’s research.  It’s an idea worthy of serious consideration.

Published in Newsday, January 6, 2014, p. A.25.  Published online in advance of publication on 1/3/14.  Access online version at: www.newsday.com/opinion/oped/opinion-alzheimer-s-cure-must-be-pursued-1.6727661.

 

Four ways for assisted living operators to facilitate transitions

(Originally titled, "Four Ways for ALFs to Facilitate Transitions for Dementia Residents.")


My wife, Clare, who has Alzheimer’s disease, recently entered the “Reflections” unit for residents with dementia in an Assisted Living Facility (ALF).  Clare’s transition from home to ALF was about as good as I could have hoped for.  However, there are four steps that our ALF could have taken to make this transition much easier for both of us. 

1.  Issue a staff list to caregivers.  When we visited the ALF where Clare was eventually placed, we received a folder with lots of helpful information.  However, not even after Clare became a resident did I ever receive a list of personnel responsible for Clare’s welfare.  I was introduced to the Director of her “Reflections” unit when he conducted the intake assessment, and I had already met the person responsible for relations with caregivers.  But I was never given a list of the aides on the three shifts responsible for Clare during each 24 hour period. 

I could have familiarized myself much more quickly and easily with the names of the many aides who help Clare had I been provided a staff list.  The list should also have included names/titles/areas of responsibility of all administrators and supervisors responsible for Clare’s care.  In addition, the direct line telephone numbers and email addresses for all administrators and supervisors should have been provided.  I eventually obtained all of this information during the first few weeks, but had that information been given to me upon Clare’s admittance it would have saved me a lot of time and effort.

2.  Provide easily readable name badges for personnel.  The ALF we selected provides name badges for its personnel that are the exact opposite of what is helpful to residents and caregivers.  The name of the ALF is very prominent and in large size lettering on a metallic badge.  The name of the employee is in much smaller size lettering.  And the employee’s title is in even smaller size lettering.  Except for the administrative personnel, the names and titles of employees are typed in 10 or 12 point font on a piece of white tape on the bottom of the badge.  I have 20/20 vision, but in order to read a person’s name and title clearly I must get very close to that person, almost violating their “personal space.”  I know that the ALF is proud of its name and wants to market its name, but for caregivers who shave already placed their loved ones in that facility, what is important is the name and title of the people working with their loved ones, not the name of the facility.  

3.  Provide removable name badges for residents.  When Clare attended day care programs, each morning she and all the other participants were given name badges upon arrival with names printed in very large 36 point font size, easily readable from a distance.  When participants left at the end of the day, the name badges were collected to be used the following day.  This was very helpful for Clare because she cannot remember names anymore.  I think that ALFs should consider a similar practice for residents in their dementia units.  Even after several weeks of being with her fellow residents 24/7, Clare is still unable to remember the names of most of her new friends.   If every dementia resident wore a name badge, identification would be a lot easier.  Needless to say, it would also make it easier for caregivers to identify a resident’s friends when they come to visit.

4.  Establish formal meeting schedule with caregivers to discuss resident care.

Dementia unit administrators in ALFs should schedule meetings with the primary caregiver of a dementia resident on a regular basis.  These meetings would provide a formal opportunity for facility administrators to provide primary caregivers with a status update on how their loved ones are faring, and offer an opportunity for primary caregivers to ask questions and offer suggestions with respect to activities, medication protocols, etc.  Too often the observations and perceptions of caregivers are not thoroughly considered, and that is wrong.  Even with a dementia resident no longer living at home with a 24/7 caregiver, that caregiver has important history and insights that should be considered on an ongoing basis after admittance.  Meetings could be modeled along the lines of federally mandated school district Committee on Special Education (CSE) meetings for classified special education students.  For CSE meetings, parents are invited to attend so district administrators can provide a status update on how their children are doing, and so parents have an opportunity to ask questions and offer suggestions on any perceived needs for improvement. 

I would advocate that such meetings be offered to caregivers of dementia residents one month after resident admission, and then once every three months after that date.  As a retired principal, I can understand the reluctance of ALF administrators to add yet more meetings to their schedule.  However, as a caregiver whose wife is in such a facility, I can attest to the difficulty of finding the people I need to speak with on any given day due to different work shifts.  At least if I knew a meeting was scheduled in a given week, I could maintain a list of questions knowing that the administrators will all be there to respond to my questions at our scheduled meeting. 

Although these four suggestions are based upon my own personal experience with one ALF, I know from many others in my support groups that I would probably be making one or more of these same suggestions had Clare been placed elsewhere.  ALFs should be issuing staff lists to caregivers upon admission of their loved ones, providing personnel with easily readable name badges, providing dementia residents with easily readable name badges so they can readily identify each other, and scheduling formal meetings with caregivers to discuss resident progress.

Published as guest blog column in McKnight's Long-Term Care News. December 20, 2013.  Access online only at www.mcknights.com/blogs/section/2907/

The NFL and Alzheimer's - Go Purple

(Note: This article was originally titled, "The NFL and Alzheimer's ... Pink and Purple")


A 2012 study of nearly 3500 former National Football League (NFL) players concluded that ex-NFL players were three times as likely as the general population to die from a neurodegenerative disease such as Alzheimer’s. Two studies published in 2013 concluded that even one concussion can cause degenerative brain changes similar to those with Alzheimer’s.  

Aware of the links between concussions and Alzheimer’s, the NFL has adopted stronger rules to help minimize head injuries, and in 2012 donated $30 million to the National Institutes of Health (NIH), in part to research “the potential relationship between traumatic brain injury and later life neurodegenerative disorders, especially Alzheimer’s disease.” In 2013, the NFL announced a $60 million partnership with General Electric Co., in part to research brain injuries. 

And now comes news of a $765 million dollar settlement between the NFL and more than 4500 retirees and families of players who have died of diseases they claimed were due to head trauma. One former NFL player noted that the lawsuit was never intended to harm the NFL, but that former players “wanted to raise awareness about their injuries.”

In 1983 when President Reagan designated November as National Alzheimer’s Awareness Month, fewer than 2 million Americans had Alzheimer’s. Today more than 5 million Americans have Alzheimer’s. Without a medical breakthrough, those numbers are expected to rise to more than 7 million by 2025 and more than 14 million by 2050. 

Already our 6th leading cause of death, Alzheimer’s is the only disease among the top ten killers in the U.S. with no effective means of prevention, treatment, or cure, and deaths due to Alzheimer’s have increased 68% between 2000 – 2010. Care for people with Alzheimer’s costs our nation more than $200 billion each year, with $140 billion of that amount paid by Medicare and Medicaid. Projected annual costs are expected to exceed $1 trillion by 2050. 

The most watched TV programs each year are NFL games and such large audiences give the NFL a tremendous opportunity to use its broadcasts for public service. To their credit, since 2009 the NFL has used October broadcasts to support breast cancer awareness and help raise money for research. Football players show their support by wearing pink on their uniforms and using pink equipment. Having lost my mother to cancer, and with relatives currently dealing with cancer, I applaud this NFL leadership role and enjoy seeing lots of pink on my TV screen in October.

Another opportunity for leadership would be for the NFL to dedicate November broadcasts to Alzheimer’s awareness. Aside from raising money for Alzheimer’s research, such attention would help more people recognize possible Alzheimer’s symptoms that they or their loved ones are experiencing so they can follow up with their doctors. And more people caring for loved ones with Alzheimer’s could learn about additional resources to help them as caregivers. Football players would undoubtedly agree to show their support for Alzheimer’s awareness by wearing purple on their uniforms and using purple equipment.

NFL Commissioner Goodell once said, “A lot of times, you know the right thing to do. But you have to have the courage to do it.” Using NFL broadcasts to promote Alzheimer’s awareness and research is the right thing to do.

Pink is a beautiful color. So is purple.

Published as a guest column on the "by 2020" blog of USAgainstAlzheimer's website, October 29, 2013.  Access at: www.usagainstalzheimers.org/blog.

Weighing a Difficult Decision: The 'When' and 'Where' of Assisted Living Placement

Note:  The original submission below was titled, "When it is Time for Assisted Living."

As a spouse caregiver for my wife, Clare, who was diagnosed with young onset Alzheimer’s Disease (AD) in 2009, I have faced some very painful decisions.  Without doubt, until recently the most painful decision was about driving.  When I had my first discussions with Clare about how it was no longer safe for her to continue driving, we argued like never before ... amid many tears by both of us.  After our initial discussions, I realized that Clare was not going to stop driving without a lot of pressure from me.  Members of my spouse support group at the Long Island Alzheimer’s Foundation (LIAF) had prepared me well for those emotional discussions.  They told me that taking away the car keys was going to be a painful decision, but one I had to make.

However, no amount of support can really prepare someone for the crying and screaming of a spouse trying to fiercely hold onto a symbol of independence, especially when that spouse is in denial and still feeling that he or she can drive safely.  Although there are differences of opinion as to when someone with AD should stop driving, I feel very strongly that driving should end once there is an AD diagnosis ...  if not immediately, then certainly within a few months.  Once there is an AD diagnosis, it’s no longer a question of if it is unsafe to drive ... the only question is when.  As AD worsens, one’s ability to drive safely will become increasingly impaired, and no one can predict just when that impairment might cause an otherwise preventable accident.  Therefore, in my opinion, it makes sense to stop driving before people are injured or property is damaged, rather than continue to drive until an accident actually happens. 

When a loved one has AD, the caregiver must eventually decide when to take full responsibility for completing all routine household tasks, administering medication, and providing increased assistance with various activities of daily living.  Along with these decisions, when the caregiver’s need for respite time requires placing loved ones in day care programs, or hiring part-time home companions or aides, all can be very emotional times for caregivers.  They all were for me but, until recently, I still would still have said that taking away the car keys was the most emotionally difficult decision I’ve had to make as a caregiver.  However, as Clare‘s decline spiraled downward, I’ve since had to make another decision that proved to be even more painful than ending her driving days.  I decided it was time to place Clare in an Assisted Living Residence (ALR).  Without doubt, if I now had to describe the one most gut-wrenching and emotionally draining decision I’ve ever had to make as a spouse caregiver, this is it.

For many months prior to making this ALR decision, I was becoming more and more stressed due to Clare’s worsening impairment, especially her lack of any short term memory.  Her inability to retain any information led to two very frustrating behaviors.  I referred to the first one as “Groundhog Day” syndrome.  Over and over, Clare would ask me the exact same questions, totally unaware that she was asking me the same questions I had just answered moments earlier.  It became incredibly difficult for me to respond as if it was the first and only time she had asked me that question.  The second very frustrating behavior was a complete inability to carry out a simple one step direction because she would forget in a matter of seconds.  I would remind her of a simple procedure, such as to place food back in the refrigerator after eating, but she would always forget.

Cognitively, Clare was having increasing difficulties processing information.  Acutely aware of what was happening to her, and knowing there were fewer and fewer things she could still do successfully at home, Clare was constantly asking to “help me” around the house.  If I said no, she’d get angry and say things like, “There are so few things I can still do.  Please let me do that.  I can still do that.”  If I said yes, she’d invariably start doing that task incorrectly.  If I would correct her or ask her to stop so I could take over, she would say with anger in her voice something like, “Well, if you had told me to do that, I would have done that.”  Of course, I had told her to do precisely that, several times, but she just couldn’t process the information or remember what I had said. 

As her memory and cognition worsened, along with her aphasia, Clare was also starting to lose her thoughts midway through asking me a question or making a comment.  She also began speaking incoherently at times and I was increasingly unable to understand what she wanted to say to me.  I knew I desperately needed more respite time and, prior to considering an ALR placement, I gradually upped Clare’s time in day care programs.  She originally went once a week for 4 hours and that eventually increased to four days a week for a total of 22 hours.  Whereas I appreciated the additional respite time by myself, time spent with Clare at home was also changing.   Clare could no longer read easily or play her favorite word games independently, and she had lost interest long ago in piano, guitar, and other favorite activities.  Because she could no longer do anything independently, from the time we got home after I picked her up from day care until the time we went to sleep, all we did was watch TV together.  Often we watched the same repeat broadcasts over and over because, to Clare, her favorite repeat show was always “new” to her. 

Clare was now feeling tired all the time and her need for sleep increased.  If she didn’t sleep for at least 11 hours, it would be very difficult to wake her up the next morning in time to go to day care.  We would watch TV in our den starting at 4 p.m. every weekday, go to our bedroom before 7 p.m. to give Clare sufficient time to get ready for bed, and then watch TV in bed until 9 p.m. when I would turn off the sound so she could go to sleep.  On weekends, Clare would sleep for up to 15 hours, and then we’d sit and watch TV all day unless seeing friends or family.  Often when I would suggest that we take a walk or go somewhere, Clare would say she was too tired and preferred to just sit and watch TV.  So ... we sat and watched TV together.  Whenever I would leave her side for a few minutes to check email or to do something else, Clare would come to find me saying she was bored by herself or didn’t know where I was.

The worst and most frustrating effect of all these changes in our lives was that for the first time in our 46 years of marriage, matters of personal hygiene, dressing properly and selecting clothing appropriate for the weather, daily medication, eating, and a host of other issues were causing daily arguments and shouting matches.  We were arguing more in a period of several months than we had probably argued in all of our previous years of marriage put together.  I also noticed that things were starting to “fall through the cracks.”  I had so much on my mind trying to help Clare get through each day that on some days I’d forget to remind her about important matters.  All of these “falls” invariably led to more stress, and the stress led to more arguments.

That is when I started to think about whether the time had come for me to consider an ALR placement for Clare.  Instead of leaving our house at 9 a.m. for day care programs and picking Clare up in time to arrive home at 4 p.m., I envisioned that she would simply wake up in the ALR and have an even better quality day care program during those same hours.  I could then arrive at the ALR at around 4 p.m. and there would be nothing to argue about.  With the ALR responsible for all of the activities of daily living, and with no household tasks for Clare to “help me” with, and with no “reminders” I would have to give to Clare, I imagined that all of our time together in the ALR would be quality time spent hugging and talking and laughing.  We could even spend some of that time watching TV together just as we did at home if that’s what Clare wanted to do.  I envisioned “signing her out” occasionally so we could go to eat at her favorite restaurants, and signing her out on some weekends so we could spend time with friends and even take short day trips as long as her health would still allow for such activities.  The more I thought about the benefits of an ALR placement at this time, the more I knew I had to learn more.

I intuitively knew that Clare was not going to accept an ALR placement easily, so when I first spoke with Clare about the need to check out ALRs, I said that it was just so we would be prepared and know where she would go when the time came.  I said that knowing “the where” and “the when” were two different decisions.  Clare readily accepted that she will need to enter an ALR at some point, so she was okay with the decision to find “the where.”  When we did our retirement planning well over a decade ago, we discussed what we wanted to do in the event either of us would eventually need a high level of care.  We both agreed that we didn’t want live-in help and both preferred to enter into an assisted living facility or nursing home what that time came. As a result of those discussions, we purchased long term health care insurance to help cover eventual costs.  However, I’m not sure that a loved one with AD, whose brain still provides many lucent moments and who remains deeply in love with and dependent upon a caregiver, will ever be ready for “the when.”  Therein lies the source of the intense emotional pain for the caregiver who must make that “when” decision. 

I placed the “when” issue temporarily aside, and over the course of several weeks I did my research and selected six ALRs that I thought would provide Clare the best possible care and greatest opportunity to be happy.  Wanting Clare to be part of the decision-making process for “the where,” we toured facilities together and agreed upon the one we felt was best.  We then returned to that same ALR a second time for one more opportunity to observe residents interacting during their lunchtime and observe resident and staff involvement in various activities.  Still agreed that this was the best place, I returned to meet with the director by myself the following week, signed several forms, and gave a deposit to place Clare on a waiting list.  I left the director’s office, got into my car, and just sat there and cried for several minutes.  

I knew that by placing a room deposit, I was accepting that “the when” had somehow already arrived.  Intellectually, I knew that it was the right decision.  Emotionally, however, I still was not completely prepared to “let Clare go” and live apart for the first time in our marriage.  I cried a lot that day ... and for several days afterwards.  With two other women ahead of Clare on the room waiting list, the director said that a bed could be available for Clare in a matter of weeks, or the wait could be several months.  I was thankful that I would still have time to prepare myself emotionally for this new reality.

Writing this article more than a month after placing that deposit, I can now say that I feel emotionally prepared to place Clare whenever that room becomes available.  I am pleased that Clare is happy with “the where” and feels that the ALR we selected will be a good place for her ... even if she feels that a placement is not necessary yet.  However, her worsening behaviors and our daily arguments have reinforced my emotional acceptance of the need for such a placement as soon as a room becomes available.  I no longer feel “caregiver guilt” that all caregivers know so well when having to make emotionally difficult decisions that they know their loved ones do not want them to make. 

Just as with the driving issue, “the when” for an ALR placement is a decision that must be made solely by the caregiver because a person with AD has mental impairment that precludes objective participation in such a decision.  And just like the decision four years ago to take away the car keys, this ALR placement decision is in Clare’s best interests.  Even if things do not work out exactly as I had envisioned, I know that once placed in the ALR Clare will be in a safe and caring environment 24/7.  She will have highly trained and highly skilled people taking care of her.  Her daily activity schedule will allow her the socialization and mental stimulation she needs to keep her mind actively engaged in enjoyable activities.  She will eat nutritional meals each day and be able to maintain a high quality of life with dignity.  In short, she will receive all of the care I want her to have.

Will our nights alone feel lonely?  Yes.  Will our large house feel empty?  Yes.  Will we miss each other?  Yes.  But we will not miss those daily arguments, and we will not miss the stress caused by those arguments.  And I will not miss the stress caused by trying to remember all that I now must remember each day in order to properly provide for Clare’s needs. 

I cannot now imagine a decision more painful to make as a spouse caregiver ... but it is the right decision to make at this time in our AD journey.  Whenever I do receive that phone call from the ALR director telling me that a bed is available for Clare, I’m now as emotionally prepared as I’ll ever be to say yes.  It will be an incredibly painful and emotionally difficult day, but we will somehow get through it.   It is time for assisted living.

Published in care ADvantage, Fall 2013, Vol. 9, No. 2, pp. 10-13.  Access at: www.alzfdn.org/Publications/care_advantage/issues/ca_fall13.pdf

Three Important Actions for Alzheimer's Caregivers

Many caregivers for people with Alzheimer’s Disease (AD) do not learn quickly enough about three important actions that they should take as soon as possible after their loved one is diagnosed with AD.  Were health care professionals to suggest these three actions, caregivers’ lives would be a lot less stressful as they try to provide the best care possible for their loved ones.

The first and most important action that all caregivers should take is to seek out and join a caregiver support group, preferably one that meets on a weekly basis and preferably one designed solely for others in similar caregiver roles.  All AD caregiver support groups can be helpful.  However, if a caregiver joins a “targeted” caregiver group ... such as a group whose members are all spouses of people with AD, or a group whose members are all children caring for parents with AD ... the caregiver can receive more helpful suggestions and information about caregiving from others in similar positions.  Just as or even more important, in a targeted group caregivers can receive the emotional support that is so badly needed from others who are in similar situations ... others who “get it” and can fully appreciate what everyone in the group is experiencing.  Caregivers in support groups soon learn that the course of this disease varies widely, and a common expression one hears is, “If you know one person with Alzheimer’s, you know one person with Alzheimer’s.”  However, there are more similarities than differences, and certainly the caregiver’s relationship with the person with AD ... as a spouse, a child, another friend or relative ... will greatly affect the caregiving process. 

Fortunately, I have participated in a wonderful weekly support group designed solely for spouse caregivers sponsored by the Long Island Alzheimer’s Foundation (LIAF).  In addition, I also participate in an online support group designed exclusively for AD spouse caregivers, at www.thealzheimerspouse.com.   Sadly, no health care professional ever advised me of the existence of such real and online groups.  I had to learn about such groups on my own.  And that must change.

The second important action for all caregivers is to meet with an attorney who specializes in eldercare issues.  The attorney will offer guidance to be sure that all end of life documents are in order  ... wills or trusts, living wills, health care proxies, and durable power of attorney … and, if not, the attorney can prepare such documents.  Caregivers should also discuss a long term health care policy if their loved one with AD does not currently have such insurance.  A policy may now be too costly to initiate or the person with AD may no longer even qualify.  However, the eldercare attorney should discuss such options with the caregiver as part of a comprehensive review.  Once again, no health care professional ever advised me to do this, but we talked about the need to do so in my spouse support group.

The third important action that all caregivers should take is to meet with a certified financial advisor to discuss preserving, protecting and growing current income, investments, and other assets.  This is also another opportunity for caregivers to discuss long term health care policies that may impact other financial decisions.  As loved ones with AD decline, caregivers will slowly but surely discover their need for respite time.  Hiring part-time home health aides, companions, and enrolling loved ones in day care programs will be considered.  As the AD decline worsens even more, caregivers will wrestle with the need to hire full-time home health aides or private nurses, or consider placing their loved one in assisted living residences, nursing homes, or hospice facilities.  All of these decisions have financial implications, and a financial advisor can help the caregiver plan more wisely for the future.  Again, no health care professional ever advised me to seek out a financial advisor, but we talked about this need in my spouse support group.

Caregivers cannot prevent the inevitable outcome once loved ones are diagnosed with Alzheimer’s.   However, health care professionals can empower caregivers by suggesting these three actions ... join a good support group, meet with an eldercare attorney, and meet with a financial advisor.  Health care professionals who do this will enable caregivers to better protect and provide for themselves and their loved ones ... emotionally, legally, and financially.  

 

Published online in Clinical Geriatrics on 10/1/13. Access at:
http://www.clinicalgeriatrics.com/content/Three-Important-Actions-Alzheimer%E2%80%99s-Caregivers. This same article will be published in the October issue of its sister publication, Annals of Long Term Care.