Friday, April 18, 2014

Helping Caregivers Prepare for Emergencies

My wife, Clare, has Alzheimer’s, and was recently placed in the dementia unit of an assisted living facility.  However, when she was at home and I was her 24/7 caregiver, I had thought about what I would have done if an emergency had prevented me from caring for Clare each day.  This was an even more heightened concern once it became increasingly obvious to me that I would soon need hip replacement surgery.  If Clare were at home with me when I would have that surgery, I would have had to make arrangements for Clare’s 24/7 care for the period of my hospitalization and subsequent physical therapy in a rehabilitation facility.  Fortunately, by the time I needed my surgery I had already placed Clare in the assisted living facility, so she was well cared for during my hospitalization and rehab.  But what if I needed this surgery earlier, while Clare was still living with me at home?  What would I have done?

This worry comes up all the time among 24/7 spouse caregivers, especially those with no adult children or other close relatives living nearby.  Social workers should provide guidance to caregivers to make plans in advance should an emergency cause a sole caregiver to be unable to provide that 24/7 care for a loved one.

There are really only three options available to 24/7 caregivers if an emergency prevents them from caring for their loved one: rely upon family or friends, hire assistance from government or private agencies, or place a loved one in a respite or residential senior care facility on either a temporary or permanent basis.

Rely upon family or friends
If the caregiver is lucky enough to have family or friends who can come to the house to help out in an emergency, this may be an ideal solution.  There are no costs involved and the person needing care will be in a familiar environment with familiar faces.  However, family members and friends who suddenly find themselves in the role of a 24/7 caregiver may be easily overwhelmed when discovering all that caregiving involves.  Also, family and friends may only be available to remain for short periods of time.  However, if enough family members or friends are available, perhaps a “rotating” schedule can be prepared ... each day would be “covered” for 24 hours with different friends and relatives each providing several hours of care.  If no family members or friends can provide emergency coverage, then the caregiver must consider alternative solutions.

Seek assistance from government or private agencies
Hourly home companions, health aides, nurses, and even live-in help are all available for hire.  Such assistance can be for personal care, general supervision, to engage loved ones in hobbies and activities of interest, to do shopping, housekeeping, meal preparation, and a variety of other household tasks.  Caregivers should be urged to contact local, county, or state government health or senior citizen agencies, as well as local branches of the Alzheimer’s Foundation of America or the Alzheimer’s Association, to learn about available services where they live.  Local nursing homes, assisted living facilities, and senior care centers may also sponsor daytime programs, provide home care services, or even provide “respite” programs lasting days or weeks that can be part of a caregiving solution. 

However, caregivers must also be told that 24/7 home health care can be very expensive.  Expenses for such care will vary depending upon where one lives.  Where I live, the customary rate is around $20 per hour, meaning that costs for 24/7 care can add up quickly ... $480 per day, or $3360 per week.  Unless one has a long term health care policy that covers a large part or all of these costs, the loved one or caregiver can quickly go into debt.  Some 24/7 caregivers may think they are covered because they have long term health care insurance.  However, some long term health care insurance policies only provide coverage in assisted living facilities or nursing homes.  So caregivers must check their policies very carefully, if they even have such insurance, to see if home health care costs will be covered in part or whole.

Place your loved one in a facility
If a caregiver has already been considering placing a loved one in an assisted living facility or nursing home, and knows which would be chosen when the time comes, this becomes another option.  If a bed is available for a loved one, a sooner-than-planned placement would provide the 24/7 care necessary if a caregiver emergency arises.  Similarly, if an anticipated hospitalization or other event will prevent caregivers from providing that needed 24/7 care, then caregivers may want to consider an immediate placement of their loved ones. 

Just as with home health care, assisted living and nursing home placements are not cheap.  Where I live the cost in a typical assisted living facility is usually around $200 per day or $6000 per month.  Nursing home placements can easily be 50% more.  If caregivers have long term health care policies, they must check to see criteria for coverage.  And, if their loved one will be covered, caregivers must check carefully to learn what costs, if any, they may be responsible for paying.  For example, Clare’s policy had a 100 day deductible period and we were responsible for paying all costs during that time.

The responsibility of social workers
Caregivers must be advised to prepare for emergencies that may prevent them from caring for their loved ones, and to plan ahead for such a possibility.  Caregivers never know when an emergency or unanticipated event may make their caregiving for a loved one a lot more difficult, if not impossible.  The time to make such plans is before any emergency arises. 


Caregivers should be advised to speak with family members and friends, investigate sources of government or private agency assistance, and explore temporary and long term residential placement options should an emergency arise.  Caregivers who do that will be much better prepared to act if they ever need to implement emergency procedures to care for their loved one.

Published in Social Work Today e-Newsletter, online only.  Access at: www.socialworktoday.com/enewsletter/2014/april/


Wednesday, March 12, 2014

A Caregiver's Wish List for a National Alzheimer's Agenda

Our federal government continues to provide a comparatively low level of federal funding through National Institutes of Health (NIH) grants for Alzheimer’s Disease (AD) research.  Combined spending by NIH in 2012 and 2013 for AD research is less than $1.05 billion, yet during this same two year period NIH will fund $1.68 billion of research on eye disease and disorders of vision. 1.  Eye disease and disorders of vision are not listed among the top 10 causes of death in this country according to the most recent data from the Centers for Disease Control (CDC).  However, Alzheimer’s is listed as the 6th leading cause of death. 2. AD is also the only cause of death among the top 10 killers with no effective means of prevention, treatment, or cure.  The survival rate is zero.  The mortality rate is 100% and deaths due to AD have increased 68% during the past decade 3.  And yet, research on many diseases not on the CDC list of major causes of death routinely continue to receive more NIH funding than Alzheimer’s.

In a June, 2013 proposal for more state funding for AD research, New York Congressman Steve Israel noted that, “Alzheimer’s is the most expensive malady in the United States, but federal investments in researching the disease are at an all-time low.”  With current yearly costs for caring for people with Alzheimer’s at $203 billion ... costs projected to rise to $1.2 trillion by 2050.  Rep. Israel further noted that, “researching the disease is not just a matter of compassion for a cure; it is a public policy imperative.” 4.

My wife was diagnosed with Alzheimer’s in 2009 at the age of 63. Here is my “wish list” for a National Alzheimer’s Agenda.”

Wish List items requiring more funding:

1.  The federal government must greatly increase funding for basic research into the causes of AD, and to do that NIH must change its funding priorities.  Federal grants should also be given to states to disburse to local research labs working on neurodegenerative diseases. 

2.  We also need increased federal funding to subsidize clinical trials for potentially new AD medications.  Trials should last at least one year and require follow-up study to be sure there are no long term side effects.  FDA approved AD medication should be required to have a label indicating its effectiveness has only been proven for some people for the period of time of the clinical trials.  Current FDA approved AD medications found “effective” for “some” participants in clinical trials lasting only 26 weeks are often prescribed for many years with no evidence to indicate that they remain effective.  Labels would alert caregivers and patients that their doctors are prescribing costly medication that may no longer be effective, and such money may be better spent on other patient or caregiver needs.  5.

There is a movement by some to “fast track” the approval process for new AD medications.  However, briefer clinical trials can result in medications having unintended consequences, such as unanticipated side effects that may only present when a patient receives that medication for a longer period of time.  In addition, “effectiveness” in a brief trial of a few weeks or months may not be demonstrated after 12 months or longer.  Unless fast track approval is requested for a medication that may potentially stop or reverse AD declines immediately, the wiser course of action is to let clinical trials proceed for at least a year.  It is neither fair nor wise to drain money from patients and caregivers for medication that may be shown to be ineffective or harmful only months after usage begins. 

3.  States must provide money to local AD organizations, assisted living facilities, non-profit social organizations, hospitals, and nursing homes to create more special focus AD caregiver support groups.  Such groups not only educate caregivers about how to deal effectively with loved ones with AD, but just as important they can provide caregivers the emotional support they need.  No one ‘gets it’ like a fellow AD caregiver.  Although each caregiver’s situation is different ... if you know one person with AD, then you know one person with AD ... and all caregivers are paddling in different boats ... all of those boats are paddling in Lake Alzheimer’s.

4.  States must similarly provide more money for AD day care programs, respite programs, companion services, and home health aide services.  At some point, many people with AD will need to be placed in assisted living or nursing home facilities, but access to less costly programs would allow some caregivers to keep their loved ones at home for a longer period of time.  If not poor enough to qualify for Medicaid, and not fortunate enough to have long term health care insurance or sufficient funds to pay skyrocketing monthly placement costs, assisted living or nursing home costs can easily consume the caregiver’s entire retirement nest egg. 

Wish List items requiring changes in protocols for many doctors:

5.  Doctors must pay more attention to what caregivers tell them during office visits!  Too often, caregiver observations of AD symptoms in their loved ones are ignored by doctors if AD symptoms are not demonstrated on tests or observed during office visits.  Frustrated caregivers too often watch their loved ones initially treated for stress, anxiety, depression or a variety of other issues instead of being treated for the worsening AD symptoms that they routinely observe on a daily basis.  We already have research supporting the effectiveness of brief caregiver questionnaires to screen for AD.  Doctors should administer a screening questionnaire to any caregivers expressing concerns about a loved one.  The AD8 questionnaire only takes about 2 minutes to administer.  Even the most time pressured doctor can find 2 minutes to follow up on caregiver concerns about a loved one’s symptoms that may very well be early signs of AD.  6.

6.  Doctors must inform patients and their caregivers about support groups and helpful programs when issuing an AD diagnosis.  Too many caregivers must learn by themselves about available support programs for themselves and those with AD.  Doctors must do a much better job of empowering patients and caregivers with such information, and providing a simple handout would be very helpful.  7.

7.  Doctors who issue AD diagnoses should provide a brief handout explaining the stages of the degenerative progression of AD over time.  Either at or shortly after diagnosis, doctors must level with their patients and caregivers about treatment options and disease progression so they can plan accordingly.  Patients and caregivers must receive accurate information about their disease to allow them time to make sure certain documents are in order ... will or trust, living will, health care proxy, durable power of attorney ... and time to meet with an eldercare attorney and/or a financial advisor to properly prepare for their futures. 8.

8.  Doctors should be required to report every AD diagnosis to their state Department of Motor Vehicles, which in turn should mandate surrender of driver’s licenses as soon as possible ... but no later than one year after diagnosis.  Some people with AD will be able to drive safely for more than one year, but many won’t.  By definition, an AD diagnosis implies mental impairment that will, eventually, impact one’s ability to drive a vehicle safely.  One year is more than enough time for someone with AD to arrange for other means of travel, if necessary.  A person with AD who continues to drive after diagnosis potentially places that person, anyone else inside that person’s vehicle, people in other vehicles, and innocent bystanders in harm’s way.  9.

Wish List items requiring caregiver voices and the political will to change

9.  Local, state, and national AD advisory panels must seek more input directly from 24/7 caregivers.  All too often, advisory panels are limited to members of government agencies, research facilities, lobbying groups, and caregivers representing widely known AD organizations.  While such panel members definitely have much to contribute, 24/7 caregivers unaffiliated with any AD organizations also have much to contribute.  Wouldn’t insights gained from daily caregiver experiences be helpful in shaping local, state, and national AD polices?  Unless someone lives 24/7 with a loved one who has AD, one cannot possibly have even the remotest idea of what an AD caregiver’s life is like.

I was pleased when president Obama signed the Federal National Alzheimer’s Project Act (NAPA) into law in 2011, but the 26 member NAPA Advisory Council has only one member who is a 24/7 AD caregiver.  10.  NAPA must add more 24/7 caregiver voices to their Advisory Council to hear firsthand about how unavailable services affect caregivers and their loved ones, and how available services are often beyond a caregiver’s ability to pay.  Without hearing such caregiver voices, NAPA is not as inclusive as it should be when making recommendations for action.

10.  In 1983, when fewer than 2 million Americans were suffering with Alzheimer’s,  President Reagan ... who, ironically, would later be diagnosed with and die from AD complications ... signed a proclamation declaring November as National Alzheimer’s Disease Awareness Month.  He cited the need for more research, noting “the emotional, financial and social consequences of Alzheimer’s are so devastating that it deserves special attention.”  11.

Thirty years later, more than 5 million people are now suffering with Alzheimer’s ... a number expected to reach 14 million by 2050. 12.  In his Vision Statement for the 2013 update to the NAPA goal statement, President Obama wrote, “For millions of Americans, the heartbreak of watching a loved one struggling with Alzheimer’s disease is a pain they know all too well.  Alzheimer’s disease burdens an increasing number of our Nation’s elders and their families, and it is essential that we confront the challenge it poses to our public health.”  13. 

The President’s reference to our ‘Nation’s elders’ reflects a lack of knowledge that more than 200,000 people with Alzheimer’s are under the age of 60, some still in  their 30s or 40s.  More importantly, when will we start to “confront the challenges” posed by AD?  It’s now more than 2 years since NAPA’s creation, but NIH is continuing to fund AD research near the same relatively low levels and I see no legislation indicating that we are confronting those challenges.

We as a nation must have the political will to make tough choices now during these difficult economic times.  The president knows this.  Congress knows this.  And yet, it seems that another president thirty years from now will echo Presidents Reagan and Obama to say that AD “deserves special attention” or that we must “confront the challenge.”  Thirty more years is too long to wait.  The time for our country to deal with the human and economic burdens of Alzheimer’s is now.   
_____________________________________________________

1.  Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC).  U.S. Department of Health & Human Services, NIH Research Portfolio Online Report Tools (online).  Available at:  www.report.nih.gov/categorical_spending.aspx.  Accessed July 16, 2013.

2.  National Vital Statistic Reports, Vol. 61, No. 6, October 10, 2012.  Centers for Disease Control and Prevention.  Available at: 
www.cdc.gov/nchs/data/nvsr/nvsr61_06.pdf.  Accessed July 16, 2013.

3.  Alzheimer’s Association 2013 Alzheimer’s Disease Facts and Figures. Alzheimer’s Association (online).   Available at: www.alz.org/downloads/facts_figures_2013.pdf.   Accessed July 16, 2013

4.  Pols call for statewide Alzheimer’s effort.  Newsday, June 17, 2013.

5.  Vann AS.  Current Alzheimer’s Medications: Effective Treatment Options or Expensive Bottles of Hope?  Journal of the American Medical Directors Association, July 2013, Vol. 14, No. 7, pp. 525-526.

6.  Vann A.  Listen More Carefully to Alzheimer’s Caregivers.  Journal of the American Geriatrics Society, October, 2012, Vol. 60, no. 10, p. 2000.

7.  Vann AS.  Caregiver Support Groups.  Clinical Trials: Journal of the Society for Clinical Trials.  Currently in press.

8.  Vann A.  Empowering people with Alzheimer’s disease and their caregivers – There is still much work to be done.  Dementia, March, 2013, Vol. 12, No. 2, pp. 155-156.

9.  Vann A.  Please Tell Alzheimer’s Patients Not to Drive.  Journal of the American Geriatrics Society, March, 2012, Vol. 60, No. 3, pp. 597-598.

10. Non-Federal National Alzheimer’s Project Act Advisory Council Members.  U.S. Department of Health & Human Services (online).  Available at: www.aspe.hhs.gov/daltcp/napa/bios.shtml.  Accessed July 16, 2013.

11. November is Alzheimer’s Disease Awareness Month.  Alzheimer’s Association (online).  Available at: www.alz.org/swmo/in_my_community_15039.asp.  Accessed July 16, 2013. 

12.  Alzheimer’s Association 2013 Alzheimer’s Disease Facts and Figures (online).   Available at: www.alz.org/downloads/facts_figures_2013.pdf.  Accessed July 16, 2013.

13.  National Plan to Address Alzheimer’s Disease: 2013 Update.  U.S. Department of Health & Human Services (online).  Available at:  www.aspe.hhs.gov/daltcp/napa/NatlPlan2013.shtml.  Accessed July 16, 2013.

Published in American Journal of Alzheimer's Disease & Other Dementias.  Vol. 29, No. 2, March, 2014, pp. 11-113


Tuesday, January 21, 2014

Advising Alzheimer's Caregivers About Assisted Living


I am a caregiver for my wife, Clare, who was diagnosed with early or young onset  Alzheimer’s Disease (AD) in 2009.  Four years later, as Clare started to decline much further and at a faster pace, my caregiving responsibilities started to multiply quickly.  Day care programs were not providing me with enough respite time, and when together each afternoon and evening we would often argue about little things ... although we had never argued like that before.  Our “fairy tale” 46 year marital relationship was becoming increasingly strained; whenever I would remind Clare to do something she had forgotten, she would yell at me, telling me she “was not a baby” and didn’t need me to remind her of what she needed to do.  But, of course, as her AD worsened she couldn’t remember the most basic things she needed to do and I had to remind her again and again.  I still love Clare as much as I ever did, but our relationship began to morph from one of loving husband-wife to one of loving parent-child.

I knew that it was time for me to think about an Assisted Living placement at some point in the near future, so I started visiting websites of every Assisted Living Residence (ALR) in our area.  I had listened carefully at my weekly spouse support group meetings at the Long Island Alzheimer’s Foundation (LIAF) and read carefully in my online support group chat rooms whenever others discussed ALR placements.  And I learned many things.  For one, I learned that since Clare has AD, I needed to find an ALR with a separate “lockdown” wing for resident safety since many people with AD have a tendency to wander.  I also learned how fortunate I was to already have long term health care insurance that would pay the considerable ALR monthly expenses.

But the most important thing I learned from members in my support groups, or so I thought at that time, was that I had better not miss that ALR “window of opportunity” to place Clare.  Several members noted that if a person with AD declines significantly in the ability to handle even one of the Activities of Daily Living (ADL) independently, that ALR window may be closed.  With Clare continuing to decline faster and faster, my stress started increasing exponentially.  I worried that that by the time I was emotionally ready to place Clare, she might no longer be able to ambulate, eat, bathe, transfer, or dress independently, or she might be completely incontinent.  I was led to believe that if I missed that “window,” my only option would be to place Clare in a nursing home or hire live-in help when I could no longer care for her by myself.  A number of support group members also said that even for someone already residing in an ALR, worsening declines in some key ADL areas ... such as inability to transfer without assistance or complete incontinence ... could cause the ALR to discharge the resident.  One person did say, however, that an ALR allowed her husband to remain when unable to transfer after she agreed to pay for a private health aide to provide additional assistance.  But I was told that practice was very unusual.

As I worried more and more about missing that “window,” I prepared a detailed evaluation form to bring with me on ALR tours.  I revised questions from online sources, added my own questions, and put together a new form.  I then asked two exceptional LIAF social workers, Alana and Tori, to collectively review my form.  They suggested several additional questions, the last one being, “What circumstances would result in a resident being discharged from the facility?” Evaluation form in hand, I then scheduled tours of six different ALRs and we made our first visit.
 
We both liked the first ALR we visited, and that evening I was reviewed all of the director’s responses to my questions, trying to process all we had seen and heard that afternoon during our tour.  I realized that I had forgotten to ask the question about discharge conditions, so I emailed the ALR director requesting this additional information.  Her response was totally unexpected, and one that sent me to do more research before visiting any other ALRs.  The director said that, due to their EALR certification, they would not need to discharge Clare unless she was a danger to herself or others, or had such acute medical needs that she needed to be under a doctor’s supervision 24/7.

EALR certification?  The ALR director had never mentioned anything about EALR certification during our tour.  I didn’t even know what those letters stood for.  After receiving the director’s email, I double checked both the brochure she had given me and their website, but I could find no mention of EALR certification.  I now had a lot of information about that ALR’s staffing, activity programs, common areas and facilities, meals, sleeping accommodations, and costs.  However, I also realized that I still needed to learn more, so I went online to research EALR certification.
 
According to the NYS Department of Health website, an ALR, even one with a “lockdown” area for residents with Alzheimer’s, is only licensed to provide a “basic” level of care.  As such, an ALR is not permitted to admit people with Alzheimer’s if they are unable to independently walk, climb stairs, transfer (or are chairfast), or have unmanaged incontinence. 1   So it turned out that my support group was correct about that fact, but I mistakenly thought this was applicable to all ALRs in New York.  Not true.  I also learned from this website that some ALRs in New York have an “Enhanced Assisted Living Residence” license (EALR) and/or a “Special Needs Assisted Living Residence” license (SNALR) that permits them to admit and retain people with Alzheimer’s at any level of care with just one exception ... prior to admittance that person cannot require 24/7 skilled nursing or medical care.  However, if after admission residents should require this advanced level of care, an ALR with EALR or SNALR certification can provide that 24/7 skilled nursing or medical care.  The effect of this continuity of care allows AD residents to age in place without needing to be discharged. 2

This new information was a complete “game changer” for me.  After my research that evening, all that stress to place Clare in an ALR before missing that “window” was gone. Sure, she was continuing to decline, but she was a long way from needing 24/7 skilled nursing or medical care.  I knew that evening that I would only place Clare in an ALR that had EALR or SNALR certification, so there was no “window of opportunity” to miss.  There was no “window” at all.  I was relieved to know that in whatever ALR we would select, Clare would not be automatically discharged to a nursing home or hospice in the future as her condition worsened.  Absent one of those two caveats ... being a danger to herself or others, or requiring 24/7 doctor supervision ... Clare’s ALR would be her “final home.”  With this knowledge, I then called the other ALRs we had planned to visit.  Those without such certification were immediately eliminated from consideration.  During our tours I also learned that ALR admission wait list policies varied.  In some ALRs, when a prospective resident at the top of their wait list is informed of the availability of a bed and rejects it, the prospective resident then goes to the bottom of the wait list.  However, in some ALRs, once at the top of the wait list a prospective resident who rejects an available room remains at the top until that person either accepts the next available room or requests removal from the wait list.  Since we could not be sure of just when Clare would need to be admitted to an ALR, we also eliminated all facilities with unfavorable wait list policies.

Each ALR we visited had a different “ambience.”  We observed staff interactions with residents and resident interactions with each other during meals and activities.  We saw many differences in quality, scope, and location of activities and activity centers, bedrooms, lighting, furniture, and a variety of amenities.  We noted that some ALRs had visiting clergy, and onsite weekly religious services.  Some even provided escorted transportation to nearby churches and temples.   After we completed our tours, we agreed on the EALR certified facility that we thought offered Clare the best likelihood for quality care and happiness, and I placed Clare’s name on their admission wait list.  Ironically (or poetic justice?), the ALR we selected was the first one we visited, the one whose director enlightened me about the existence of EALR certification.

The website of the Empire State Association of Assisted Living cites data reported by the NYS Department of Health in 2008 indicating more than 65,000 beds are available in facilities that provide assisted living in New York.  Of that total, fewer than 8000 beds were in facilities with EALR or SNALR certification. 3 I have since learned from AD spouses across the country that it may be hard to find other states with ALRs that allow residents to “age in place.”  However, I also know that many states revise ALR regulations as their population needs change. 

Health care professionals and social workers who counsel AD caregivers may not always have time to remain well informed about state certification policies and practices of ALRs in their local communities.   However, they do have time to advise caregivers to ask questions about ALR admission, discharge, aging-in-place, and wait list policies.   I am indebted to Alana and Tori, the two LIAF social workers who suggested I ask such questions.   Even if there are no ALRs with the equivalent type of EALR or SNALR certification in your community, there still may be significant differences among local ALRs.  Informing caregivers to ask about such differences can be extremely helpful.  This knowledge can be a “game changer” for those you counsel ... just as it was a game changer for me. 

1.  Assisted Living Reform Act, State of New York Department of Health, pp. 2-3.  Available at: www.ltccc.org/key/documentsALRDearAdminLetter060305.pdf.  Accessed on 5/21/13.

2.  Assisted Living Reform Act, State of New York Department of Health, pp. 4-5.  Available at: www.ltccc.org/key/documentsALRDearAdminLetter060305.pdf.  Accessed on 5/21/13.

3. “Frequently Asked Questions.”  Empire State Association of Assisted Living,

p. 2.  Available at: www.ny-assisted-living.org/consumer/faq.htm.  Accessed on 5/21/13.


Assisted Living Residence Evaluation and Question Checklist

Date Visited: _______________________
Facility: ___________________________    Contact: ___________________________
Location: __________________________    Phone: ___________________________

Rating, 1-10 (10=Excellent, 5=Average, 1=Terrible)
Factor Considered
Rating
Notes
First impressions


Clean, cheerful, well maintained?________________________
Appropriate demographics?_____________________________
Residents seem happy/engaged?__________________________

Common areas


[  ] Game room:_______________________________________
[  ] TV room:_________________________________________
[  ] Movie room:______________________________________
[  ] Swimming pool:___________________________________
[  ] Library:__________________________________________
[  ] Computer room:____________________________________
[  ] Garden/walking paths:_______________________________
[  ] Other:____________________________________________

Rooms

Is there a long wait list for particular rooms?________________
What furnishings are provided? [  ] Bed   [  ] Dresser   [  ] Desk   [  ] Nightstand   [Other]:________________________________
What furnishings can we add?___________________________
What safety features/amenities do bathrooms have?
[  ] Grab bars   [  ] Walk-in showers   [  ] Whirlpool baths  
[  ] Other:____________________________________________
Are there call buttons by the bed?_________________________
Are there smoke detectors/carbon monoxide detectors?________
Are TV/cable/phone provided? Costs?_____________________
Are all bedding/blankets/linen/towels supplied?______________
Are these changed weekly?______________________________

Resident care

Does each AD resident have a written care plan?_____________
Is family involved in this?_______________________________
How often is the plan reviewed/revised? ___________________
What is the staff’s role with assisting resident with activities of daily living (ADLs)?___________________________________
Does facility order/administer all medications? ______________
Does staff monitor personal hygiene? [  ] Bathing   [  ] Oral care
[  ] Other:____________________________________________
Does staff monitor continence issues?_____________________
Does staff observe for signs of higher care needs?___________
What is the role of the onsite nurse?_______________________
When does the resident see a physician? ___________________
Does facility assume responsibility for scheduling routine medical care (eg, annual physical, specialty monitoring)?_____
____________________________________________________
Are costs of all medications and physician visits included in the monthly facility fee?___________________________________
If not, may the family supply the medications and have the facility administer them as directed?_______________________
If a resident prefers to sleep until noon and skip breakfast, is that OK?________________________________________________
When is free transportation provided to residents?____________
Does facility wash personal clothing?______________________
How often is it washed?________________________________

Staff

Are background checks, references, and certification required of all staff?_____________________________________________
What special training has staff received for working with cognitively impaired residents?___________________________
Is the facility fully staffed on nights and weekends? __________
Is there a dementia wing?__________ If so, what is the staff to resident ratio in this wing?______________________________
What is the staff turnover rate?___________________________
How long are staff shifts?_______________________________
What if a resident is unhappy with the aide assigned to him/her?_____________________________________________
Aside from the nurse, are any other medical personnel onsite?______________________________________________

Activities and recreation

Aside from the daily program, are there selections of daily alternative activities if a resident doesn’t like a scheduled activity?_____________________________________________
How often are there trips or activities scheduled off-site?________________________________________________
Are any religious services held onsite?_____________________
If a resident chooses not to be involved in activities, will their aide ‘push them’ to become involved, or leave them alone?  Why?_______________________________________________

Food and dining

What are the scheduled times for meals in the dining room?______________________________________________
Aside from the 3 meals, are snacks available all day?_________
What types of snacks/refreshments are provided?____________
Is there assigned seating in the dining room?________________
If so, how is seating determined?_________________________
Can guests stay for dinner?______________________________
If so, where do they eat and what is the cost?________________
Can meals be eaten in rooms?____________________________

Financing

What daily/monthly costs are not included in the room rent?________________________________________________
Once admitted, how often and by how much can monthly cost be raised?___________ ____________________________________________________
What if a resident is unhappy and must be removed after a few days or weeks? What is your refund policy?_________________
____________________________________________________

Considerations for dementia residents and changing needs

Are all exit doors alarmed and all dementia residents in a secure lockdown wing?______________________________________
How many rooms are in the dementia wing?________________
What is the average age of these residents?_________________
How many are younger than 75 years?_____________________
Does an aide bring cognitively impaired residents to/from the dining room?_________________________________________
Does an aide bring cognitively impaired residents to/from activities?____________________________________________
Should residents need a higher level of care, how much notice is given to the family to make arrangements for transfer to a nursing home or other facility?___________________________
If higher level of care is needed, can residents remain in the facility if the family pays for additional private nursing help?______         
Do any staff members at the facility currently provide such help, or have they done so in the past?__________________________
Are there any other reasons besides higher care requirements or major psychiatric issues that would lead the facility to discharge a dementia resident?____________________________________________

Emergency and discharge considerations

Are there any resident needs that cannot be met at this facility?_____________________________________________
In the event of an emergency, what hospital will residents be taken to?____________________________________________
When will the family be informed of such events? Prior to transport?____________________________________________

Visitation considerations

What are the visiting hours each day?______________________
____________________________________________________
Can a spouse or family member sign out residents anytime?____________________________________________


Placement considerations and certifications

What is the typical wait period between your assessment and placement?___________________________________________
After placement, do you recommend a period of time before a spouse contacts/visits the resident, or is this a personal decision by the family?________________________________________
Does your facility have any special licenses or certifications that enable you to accept and keep residents at higher care levels?______________________________________________

This checklist is a companion resource to the article “Advising Alzheimer’s Caregivers About Assisted Living” by Allan S. Vann, which appeared in the January 2014 issue of Annals of Long-Term Care. Permission to copy and distribute this document is hereby granted by HMP Communications.
                                                                                                                         

            

Published in Annals of Long Term Care, January, 2014, Vol. 22, No. 1,  pp.17-20.  Access at: www.annalsoflongtermcare.com/article/advising-alzheimers-caregivers-assisted-living

Sunday, January 19, 2014

Gender Adjustments for Alzheimer's Caregivers


For quite some time, I was the only male in my Alzheimer’s Disease (AD) spousal support group and quickly discovered that I could not resolve some problems for my wife, Clare, in the same way as some women were resolving similar issues for their husbands.  It’s not “who has it easier,” because both male and female spouse caregivers have a very difficult time.  However, based upon observations in my weekly spousal support group and what I’ve read in my online support groups, there are some differences along gender lines.  Here are some of them:

Getting dressed  at home - Eventually, people with AD have difficulties getting dressed each morning and that becomes a time consuming activity.  For some, getting dressed each morning is difficult because of the need to locate and then choose what to wear.  For others, it may be difficulty making an appropriate choice of clothing for that day’s particular weather conditions.  To avoid wasting time each morning, many women in my group simply made those decisions for their husbands, setting out clothing for them to wear each day.  When I picked out clothing for Clare to wear, she would say things like, “I don’t like you doing that for me.  Stop trying to manage my life.”  I tried asking Clare to select her next day’s clothing the night before, but the next morning she would try on several other outfits before being happy with her choice.  So one gender difference may be for male caregivers to allow extra time for women to get dressed each morning, and plan accordingly.  

Driving  – Once a person with AD stops driving, the caregiver must make an adjustment.  If the person with AD was the sole or primary driver in the family, the caregiver will now have to do all the driving, or rely upon neighbors, friends, relatives, public transportation, taxis and car services.  More often than not, the female caregiver will now have to do more driving.  My adjustment after Clare’s diagnosis was relatively minor since I had already been doing all the driving when in the car together.  As the lone driver, however, I had to become much more attuned to my body and surroundings.  Fatigue, alcohol consumption, weather, road conditions, and possibly even problems driving at night may become new factors to consider knowing that one’s AD spouse can no longer help with the driving anymore. 

Household Tasks  – Clare and I were both born in households where cooking and housework were considered “women’s work,” but as members of the first “baby boomer” generation we shared cooking and household tasks after we were married.  I now do all the cooking (or purchase meals from supermarkets and restaurants), and household tasks, necessitating an adjustment in how I spend my weekly time.  For the women in my support group, their main household task adjustment was learning how to do minor ‘handy man’ projects in their home.

Financial and legal matters  – Many women undergo a very steep learning curve to learn about and handle everything from overseeing their financial investments to making sure that all of their end-of-life documents are in order … wills or trusts, living wills, health care proxies, and durable power of attorney when their husbands are diagnosed with AD.  Their husbands often handled these matters without their active participation.  Many female spouses say that meetings with financial advisors, accountants, and attorneys are stressful, sometimes overwhelming, and often confusing.  For me, although my wife attended virtually every meeting about financial and legal issues, she always deferred to me to make all final decisions.  I feel quite comfortable handing legal and financial matters completely on my own going forward.  In these two areas, most male caregivers may have it easier.

The bottom line  – Health care workers should inform Alzheimer’s caregivers about  upcoming adjustments to prepare for once their loved one receives an AD diagnosis.  Regardless of gender, caregivers should take three important steps immediately ... join a support group, meet with an attorney who specializes in eldercare issues, and meet with a financial advisor.   1.

1. Allan S. Vann.  “Three Important Actions for Alzheimer’s Caregivers.”  Clinical Geriatrics.  October 1, 2013.  Access at:
http://www.clinicalgeriatrics.com/content/Three-Important-Actions-Alzheimer%E2%80%99s-Caregivers.
Published as a guest blog column in McKnight's Long Term Care & Assisted Living, January 10, 2014.  Access online only at: www.mcknights.com/blog/archive/8160/


Tuesday, January 14, 2014

The 'How' of Easing the Transition to Assisted Living


(Originally titled, “Tips to Ease the Transition to Assisted Living”)


In September, 2013, I placed my wife, Clare, in the dementia wing of an Assisted Living Facility (ALF).  Her Alzheimer’s Disease (AD) had reached the point where she needed assistance with all but one of her Activities of Daily Living (ADLs).  It was either an ALF placement or hiring 24/7 home health care aides, and we had long ago decided that in such an eventuality we would choose the ALF option.  I fully realize that not all caregivers may be able to take the steps I took due to the condition of their loved one, the availability of assisted living facilities in your geographic area, or financial considerations.  However, here are several suggestions based upon the steps I took as Clare’s 24/7 caregiver to ease her transition from our home to the ALF.
 
1.  Divide the ALF placement issue into a two-step process.   First select the “where” your loved one will go, hopefully well enough in advance so you are not rushed for time.  Once this decision is made, the “when” will allow you to move forward without delay.
 
2.  Select an ALF with a favorable wait list policy.  At some ALFs, once you place a deposit and arrive at the top of the room wait list, your name remains at the top of the wait list until you agree to accept the room.  You can pass again and again and still remain at the top of the list.  However, at some ALFs we visited, if you reject a room when it is available, your name goes to the bottom of the wait list.  If you place your loved one on a room wait list at an ALF with a favorable wait list policy, you will have more flexibility to select the “when.”

3.  Prepare your loved one to accept an ALF placement.  I fully realize that not all caregivers can have a discussion with a loved one about an ALF placement for a variety of reasons.  But if your loved one is still highly verbal as Clare was and still is, you may be able to discuss such an important issue during lucid moments.  I wanted Clare’s “takeaway” from our discussions to be what I referred to as the “half loaf” scenario.  I reminded her that we had just celebrated our 46th anniversary and, until recent months, we were lucky enough to have the “whole loaf” ... a fairy tale marriage that was absolutely wonderful.  We had rarely argued about important things during our marriage, but now we found ourselves arguing with each other every day.  I would try to help Clare but she would insist that she could do this or that without my help.  She’d yell things like, “Stop trying to manage my life.  You’re treating me like a baby.  I’m not a baby.  I can do that for myself.”  But, of course, she couldn’t do this or that by herself anymore.  She’d shout at me, I’d get frustrated and shout back, and we both hated what was happening in our marriage.

So I told Clare that whereas her AD has prevented us from continuing to have the “whole loaf” anymore and our lives had changed dramatically, an ALF placement would at least allow us to keep that “half loaf.”  The ALF would assume all of the daily responsibilities for her ADLs and that way there would be nothing for us to argue about anymore.   I promised that I would visit Clare each day and with the ALF taking responsibility for her ADLs, all of our time together would be quality time.  We both liked the idea of that “half loaf.”  I reinforced that concept by reminding Clare how much she was enjoying her day care programs and the ALF would provide her with an even better quality day care program.  I also reminded Clare that I would still take her out of the ALF from time to time to eat at her favorite restaurants and spend time with friends.  Clare internalized the “half loaf” concept and that made all the difference in the world to her attitude and eventual acceptance of an ALF placement.

Although Clare had lost interest in virtually all of her former hobbies, she still loved listening to and singing along to music.  Research has demonstrated that music memory seems to linger longer than most other memories for those with Alzheimer’s.  Aware of the assisted living facility’s “Activities Calendar,” I knew that they had at least one and often two musical activities each day.  So I timed our visits to allow us to enjoy musical programs before leaving to “leave a good taste in her mouth” so Clare would see that she would have enjoyable activities once she moved in.  Once we listened to a singer guitarist whose songs from the 1960s were very familiar to both of us, and we sang along with gusto.  Another time it was a singer with taped background music whose repertoire ranged from big band to Broadway show tunes.  Again we sang along and the smiles on Clare’s face made me feel very happy.

4.  Take a few days to move in.  When I was notified by the ALF that a room was ready, I decided to spread out the move-in process over a three day period.  I had already prepared a comprehensive packing list, but I wanted Clare to help choose which personal belongings she wanted to bring with her.  I labeled all of Clare’s clothing and other personal items as directed by the facility.  Then, with help from family and friends, over the course of parts of three days we moved in Clare’s clothing, jewelry, toiletries, etc. and placed everything where Clare could find it.  We set out lots of picture frames on tables, placed a dozen plants around the room, hung quite a few paintings and posters, and even brought in her beloved rocking chair to make her room feel more “homey.”  By taking several days to do this, Clare’s room made her feel more comfortable when she actually moved in.   On each visit I also made sure that Clare participated in a musical activity before we left, and she enjoyed each activity.  By having her room already furnished with many familiar objects from home, and by having enjoyed those musical activities, move-in day somehow seemed less abrupt than it might otherwise have been.  This helped to ease a lot of the emotional strain and pain of that difficult day ... both for Clare and for me.

5.  Once admitted to the ALF, be prepared to deal with “glitches” effectively.  Clare made about as wonderful an adjustment to the ALF as her new home as one could reasonably expect.  Within days she had made some good friends, she liked her aides, she enjoyed her program of daily activities, the meals, her room, etc. However, several “glitches” arose in those first few days and the Director asked me to be patient until he had the opportunity to sit down personally with all of the aides to review Clare’s needs with them.  With three complete changes of personnel every eight hours, it took several days for the Director to do this.  On some visits I’d notice that Clare wore the same clothing she had worn the day before.  On some visits I’d notice Clare’s hair had not been shampooed.  I obtained the Director’s email address and direct phone line and, for those first few days, was calling or sending emails on a daily basis to indicate needs to be addressed.  Since I visited Clare daily, I was also able to sit down with the Director, his assistant, his superior, and the head nurse during those first ten days until all of the glitches were dealt with.  In any large bureaucratic organization, there will inevitably be glitches now and then, so I know I must expect occasional slip-ups.  But I will follow up immediately each time such glitches may occur.  I also prepared a comprehensive list of questions for the Director to review with both daytime and nighttime aides to provide me with the information I needed to be further assured  that Clare was receiving the quality of care I expected for her.

6.  Complete other ALF-related caregiver tasks quickly.  I wanted to minimize disruptions to Clare’s new daily routines so she could socialize, make friends, and experience different activities.  I decided to visit daily during the same 3-5 p.m. time period, one in which she would not be missing any of her favorite activities.  It also backed right up to dinner time, so separation is natural when I leave after bringing her into the dining room at 5 p.m.  I had already scheduled various morning and afternoon doctor and dental appointments for Clare prior to her ALF admittance, so I rescheduled all appointments into the following month during the same two hour time slot when I visit with Clare each day.  For those who have long term health care policies, it is also important to quickly initiate a claim with the insurance company and then follow through on completing forms and submitting documents that are required.  Don’t let yourself get sidetracked because some documentation is time-sensitive.  I also had to schedule appointments with personnel representing the insurance company to evaluate Clare with respect to eligibility for insurance coverage.  Caregivers using Medicaid, or private payers without insurance, will also have notifications to make along with paperwork to complete and documents to provide.  

7.  If you decide to visit regularly, consider a backpack or carry bag.  For the first few weeks, I wore a small backpack each time I came for my two hour daily visits.  I kept a pad and pen inside to allow me to jot down observations or concerns to follow up on with the director, nurse, or some other person.  I also kept a folder with copies of previously sent emails in case I needed to follow up with someone in person on any unresolved issue.  Also in this backpack was a “staff list” I had made up so I could learn the names of Clare’s aides as quickly as possible and I referred to this list on almost every visit.  The backpack also allowed me to conveniently bring in bulky picture albums or trip albums from time to time to refresh Clare’s memories of people or travels.  A final item in my backpack was a copy of the “Daily Activities Calendar” so I could review with Clare some of the activities of each day.  Sadly, on most days Clare was unable to recall anything about any of the activities, but sometimes this daily review led to a discussion.  By Clare’s second month, a small carry bag replaced the backpack.
 
Some final words about an ALF placement:  For most caregivers, placing a loved one in a setting outside of the home is the most difficult and emotional decision they will ever make as caregivers.  The placement itself may also be a traumatic event for the loved one with dementia.  Depending upon the cognitive level of the person with Alzheimer’s, a caregiver may or may not be able to discuss various aspects of this placement.  And the person with AD may or may not be accepting of such a decision.   I was very lucky.  Clare knew, in her lucid moments, that it was time for placement. 
 
We prepared as best as we could, tried to make the actual move as easy as possible, and the ALF staff did the rest.  It was a very smooth transition and Clare adjusted beautifully.  Clare is now being well cared for in a safe and secure environment ... and she is happy.  We hope to enjoy our “half loaf” for as long as we can as we embark upon this next phase of our Alzheimer’s journey. 

 
The following was an addition to the original submission:
 In the course of the back-and-forth revision process with the editor, I had indicated that I was now faced with a new question:  I had placed Clare in an assisted living facility ... so now what?  The editor asked me to expand on my thoughts and I submitted this 1249 word “coda” as an addition to my original submission. This was printed as a separate column immediately following my article, under the heading ...
 
 You’ve Placed Your Spouse in Long Term Care ... So Now What?

Placing Clare turned out to be a complete “win-win” decision.  She is receiving high quality care in a 32 resident lockdown dementia unit (“Reflections”) that is part of a large ALF.  On most days, Clare has organized exercise periods twice a day ranging from zumba and yoga to walking, stretching, and fitness activities.  On most days she has at least one arts and crafts activity and one music activity, and on many days she has two different musical activities ranging from resident sing-longs to listening to visiting musical entertainers.  She participates in a wide range of daily activities ... balloon volleyball, billiards, chair dancing, various word and trivia games, and the list goes on and on.  There are matinee and evening movies seen in a dedicated movie theatre room ... approximately 50 movie theatre fixed seats, complete with a popcorn machine!  There are daily socials with different delicious snacks served each day, and the daily meals are of restaurant quality with at least half a dozen choices of entrees for each meal.  And there are several outings each week using the ALF bus to take both Reflections and non-Reflections residents to see musicals in local theatres, to enjoy special meals at various neighborhood restaurants, and to visit local sites.  One thing is for certain.  Clare is now leading a very active life, physically and socially!

Prior to placement, it was very hard for me to make sure that Clare ate nutritious meals.  On the four days each week when I brought her to day care programs (that provided me with badly needed respite time), more often than not Clare refused to eat breakfast and ate very little for supper.  On the other three days, she ate poorly ... mostly ‘junk food’ when she ate anything at all.  On those four day care days, I had to wake her after “only” 11 hours of sleep.  When not going to day care, she’d sleep for 14-15 hours.  Whenever I’d suggest we go for a walk, Clare would always say no ... she said she was too tired.  She felt tired all the time, even right after waking up from 15 hours of sleep, and never wanted to do anything but sit in front of the television and watch the same TV shows, over and over, despite being unable to tell me what show she was watching or what was happening even while she was watching the show.  That was her life.

Now, after being in the ALF for several months, Clare looks younger and healthier than she has looked in years.  Friends who visit all agree.  Now that she is exercising regularly, eating well (she now eats a full and nutritious breakfast, lunch, and supper!), and socializing with friends each day, Clare no longer sleeps more than 6-8 hours per night!  She is up late gabbing with friends over coffee/tea/cookies in either the Reflections dining room or in her own room or one of her friend’s rooms, and she gets up on her own by 6:30 each morning to get going on her new day!  When I visit with her each day from 3-5 p.m., she is always smiling and telling me how happy she is and that she has had a good day ... despite being unable to tell me about even one activity she participated in that day.  She is never able to recall where she went on any outings ... not even if I arrive at the same time as her ALF bus returns and I greet her as she leaves the bus ... nor can she ever tell me about any meals.  BUT ... each day when I visit she looks happy, tells me she’s happy, and the aides tell me she is eating well and is happily engaging in all of their daily activities.

These daily visits and positive reports from the aides and their supervisors have all helped to ease much of my initial sadness at placing Clare.  I still have those occasional “dark moments” when my mind reflects upon my “living widowhood,” but I try to stay away from those dark places in my mind because if I dwell there too long I’ll spend my days and nights totally depressed ... and in need of lots of tissues.  At this point, I really cannot say what the future holds for me ... a 67 year old man lucky enough to be approaching the 47th anniversary of what had been, until these past few years, a “fairy tale marriage.” 

I try to fixate on the positive ... that even though Clare is sinking deeper and deeper into her AD, we still have “half a loaf” ... a few hours each day when we can hug, kiss, and just enjoy our time together.  I love making her laugh and smile, and I love hugging and kissing her.  She is and always will be the most special person in my life.  I know that I will continue to visit with Clare every single day without fail as long as she still knows who I am, unless severe weather or some emergency prevents such a visit.  I know that I will cherish those few hours we spend together each day even if I now must do the talking and carry on the conversation for both of us.  I know that I will continue to cherish those times when I take her out to a restaurant by myself or with close friends.

But I also know that it is time for me to carve out a new phase of my own life, and as I make my recovery from recent hip replacement surgery I am looking forward to returning to previously enjoyed activities I had to place on hold these past few years when I was Clare’s 24/7 caregiver.  Golf, for example, is one such activity.  I miss playing, I miss the camaraderie with friends, and I miss the enjoyment of being away from life’s stresses for half a day.  So returning to past activities will surely be a part of my future.  But there are also many questionable areas to re-visit.  Until Clare’s AD worsened to the point where it was very difficult to travel, we used to take long international trips.  Will I ever go on such trips again?  We used to see Broadway plays and new movies regularly.  Will I ever go to a movie theater or playhouse again?

Sure, I can go to such activities with friends.  Or I can go by myself.  But will I want to do so with friends or by myself after never doing so without Clare ever since we married a week after we graduated from college?  Will I want to meet another woman at some point in the future to provide me with the companionship and ongoing friendship I always had with Clare, not to mention the attention to my physical needs for giving and receiving love?

Only time will tell.  In my real and online support groups, I’ve noticed that each member who has either lost a spouse, or whose spouse no longer is even aware of who they are, has handled similar questions in ways that best befit their individual personalities.  I suppose that, over time, I will do what I want do based on my personality and that will be that.  But whenever a caregiver places a loved one in an ALF, several months later that caregiver must answer a new question ... So, now what?

Published in care ADvantage, Alzheimer's Foundation of America.  January, 2014 winter edition, pp. 14-17.  (This article may also be accessed at the care ADvantage tab on the Alzheimer's Foundation of America website, available at: www.alzfdn.org.)