Tuesday, September 12, 2017

Discussing Brain Donation With Dementia Residents


Although the topic of organ donation, brain donation specifically, is not the most appealing topic to bring up to patients or families of patients with Alzheimer disease (AD) and dementia, having this conversation is important nonetheless, especially as the number of older adults living longer with AD grows.  
The Harvard Brain Tissue Resource Center at McLean Hospital near Boston, MA, is one of the largest brain banks in the world. Their focus is on research to learn more about diseases using brain tissue. CNN interviewed researchers at that facility and reported the following: “According to Dr Kerry Ressler, the chief scientific officer at McLean Hospital, new treatments for many mental and neurological diseases are within the grasp of the research community. However, he says, it is the lack of brain tissue that is holding back their development. Scientists at McLean Hospital and at brain banks across the world do not have enough specimens for the research community.”
Perhaps due to the sensitivity of the topic, many long-term care facilities (LTCFs) may not have protocols in place for how to educate residents and families on donation. Thankfully, I had a positive experience in relation to this topic, but others have had less helpful experiences.  
My late wife, Clare, was diagnosed with AD at a major New York City hospital, the Mount Sinai School of Medicine (MSSM). MSSM is an Alzheimer’s Disease Research Center (ADRC), one of 33 ADRCs in the United States receiving special funding from the National Institutes of Health in order to “translate research advances into improved diagnosis and care for people with Alzheimer’s disease while focusing on the program’s long-term goal—finding a way to cure and possibly prevent Alzheimer’s.
Over the course of Clare’s many visits to MSSM for periodic testing and evaluation, and to monitor her participation in a clinical trial, doctors periodically discussed MSSM’s brain tissue donation program with us. MSSM’s website describes its brain tissue donation program as follows: “The Alzheimer’s Disease Research Center (ADRC) is committed to fighting Alzheimer’s disease and other neurodegenerative diseases by understanding causes, identifying genetic components, developing new treatments, and seeking a cure. One critical part of this fight is what we learn from brain tissue donation research.”
During our discussions, doctors reviewed additional information about brain donation; we were told: “Examining the brain after death is the only way to obtain a definitive diagnosis of AD or other dementias. The more often we can confirm (or refute) the diagnosis, the better able physicians will be to accurately identify the disease in living patients. Results from brain donation research have led to important advances in current treatments for AD. And the only way to obtain the brain tissue necessary for both diagnostic and research purposes is through donations.”
We were also given papers to review about Clare’s possible participation in a national AD brain donor program. After several discussions, Clare and I agreed upon the importance of contributing to future research that may help others dealing with AD, so she signed (and I co-signed) a form giving permission for her brain to be donated post-mortem for scientific research. And, upon my wife’s death, that was done.
Because of the coordination and support that MSSM had in place regarding brain tissue donation education, Clare and I were able to make an informed decision that will hopefully lead to new advances in AD research. Although Clare had to go through the experience of living with AD, at least we could take this practical step in perhaps helping others in the future.
Unfortunately, many AD family caregivers report that their doctors never discussed the possibility or importance of brain tissue donation with them or their loved ones. And if the matter is ever brought up, it may not always be discussed properly. One member of my former AD spouse support group recently told me what happened when she brought up brain donation with her husband’s neurologist:
“The doctor’s reaction was tepid, and the recommendations and instructions were vague, unsupportive, and complicated. At that time, I didn’t need complicated. I just needed the information. I was made to feel like I was offering to donate an old sofa, instead of a brain that might have something valuable to offer to those doing research on neurological diseases.”
This woman had wanted to do her part to further AD research, yet she was met with indifference and a lack of compassion, despite the need for brain tissue donations.
It may be helpful to make information on brain donation part of the intake procedure for all AD residents and/or patients in LTCFs. Caregivers could be asked if they have made brain tissue donation provisions for their loved ones. If yes, then that information should be recorded for the future, and the caregiver should be told to bring in a copy of the signed brain tissue donation form for their records. If not, LTC personnel could provide brain tissue donation information and facilitate the donation process for caregivers if asked to do so.
Brain tissue donation is one practical way to allow researchers to learn more about AD that may one day result in new knowledge leading to an effective means of prevention, treatment, or cure.
It would not take much time or effort for a LTC administrator, social worker, physician, or nurse to be responsible for coordinating such an effort in every LTC setting.
__________________________________________________________
Dr Vann writes a monthly Commentary blog column for the Annals of Long-Term Care journal, which is one of the brands housed on the Managed Health Care Connect website. He has also written frequently for caregiver magazines, other medical journals, and major newspapers. After his wife, Clare, was diagnosed with early onset Alzheimer’s disease, Dr Vann made it a point to increase public awareness of Alzheimer’s and to help fellow caregivers. You can read more than 90 of his other articles about Alzheimer's at www.allansvann.blogspot.com. If you would like Dr Vann to respond to questions or comments about this article, please email him directly at acvann@optonline.net.


Published in Annals of Long-Term Care, September 12, 2017.  Access online only at 
http://www.managedhealthcareconnect.com/blog/discussing-brain-donation-dementia-residents


Wednesday, August 9, 2017

Coordinating Private Aides For LTC residents With Dementia

Assisted-living facilities (ALFs) in New York (NY) can hold one or a combination of different types of licensure and certification: basic, enhanced, and/or special needs. According to NY Health Department regulations, ALFs with enhanced certification can provide “aging in place by admitting and retaining residents who desire to continue to age in place…able to provide skilled nursing services and to accommodate residents who exceed the retention standards” that are found in ALFs with only basic certification.
ALFs with a “special needs” certification are authorized “to provide services to residents with special needs, most commonly Alzheimer’s disease [AD], dementia, or cognitive impairment. In addition, the assisted living operator may choose to be dually certified to provide enhanced and special needs services, thereby further allowing residents to age in place.”But there will be times when residents with AD may require additional care, even in ALFs with both enhanced and special needs certification.
My late wife, Clare, was a resident with AD in a dually certified ALF in NY. However, at a certain point, the ALF required me to hire personal “home health” aides to be with her in order to remain there to age in place. (Even if care is given in ALFs and not in private homes, these aides are still referred to as home health aides.) According to NY regulations, “Personal care tasks that exceed the approved scope of tasks in which an assisted living resident aide is trained must be performed by trained home health aides.
Regulations governing enhanced ALFs also state: “A resident shall be permitted to…continue to reside and age in place…provided the operator, the resident’s physician, and, if applicable, the resident’s licensed or certified home care agency agree that the additional needs of the resident can be safely and appropriately met at the residence.”
According to the National Center for Assisted Living, ALFs are responsible for providing “coordination of services by outside health care providers.” But what exactly does this responsibility imply? What is meant by “coordination,” and what procedures should ALFs implement to provide this coordination?
Below are some experiences I had when my wife was a resident in an ALF, demonstrating the many instances where care coordination in long-term care facilities needs improvement.
  • When my wife needed services provided by an outside health care provider, the ALF chose the agency. As the caregiver, I had no input. After observing and reporting negligent care and/or shoddy work habits of outside aides assigned to care for Clare, the AD unit supervisor told me I should contact the care provider. To their credit, new aides were assigned each time I complained to the care provider. But why didn’t the facility complain to the outside care agency to ensure that Clare was receiving proper care?
  • My daughter and I spent time with each new agency aide to provide specific instructions for my wife’s care regarding food, clothing, personal hygiene, etc. But too often a different aide would be assigned the following day, an aide who had no knowledge of the specific instructions for my wife. When I would find out, my daughter and I would meet with the new aide, but why didn’t the AD unit supervisor communicate those specific instructions to new aides initially?
  • I visited my wife on a daily basis, and several times I noticed aides arriving late or leaving early.  But no one at the facility ever informed me of when an aide arrived late or left early. Shouldn’t outside aide arrival and departure time be monitored by facilities? 
  • When I received statements from the outside care provider detailing charges already billed to my credit card, I sometimes noticed billing for hours when the aide was not there, or overtime charges without advance notice that overtime rates would apply. But I could never be sure that aides worked for all hours billed when I was not personally there to verify such hours, and again, no one from the facility had recorded their presence. Shouldn’t outside care agencies submit their statements first to facilities for verification?
  • It would be very helpful for already stressed caregivers if care facilities took more responsibility for supervising and coordinating personal aides hired by caregivers to allow their loved ones to age in place.
_____________________________________________________
Dr Vann is a frequent writer in caregiver magazines, medical journals, and in major newspapers. After his wife, Clare, was diagnosed with early onset Alzheimer’s disease, Dr Vann made it a point to increase public awareness of Alzheimer’s and to help fellow caregivers. You can read his other pieces at www.allansvann.blogspot.com. If you would like Dr Vann to respond to questions or comments about this article, please email him directly at acvann@optonline.net
© Copyright 20
Published in Annals of Long-Term Care, August 7, 2017.  Access online only at:



Thursday, August 3, 2017

Personal Blog #2 ... The Truth About Alzheimer’s Disease Through the Eyes of a Home Caregiver

Although I had no editorial control over what was printed, Angels Homecare, a Chicago based organization, invited me to share some thoughts about caregiving for a forthcoming online article. That organization published its online piece today, 8/3/17, giving the perspectives of four Alzheimer's caregivers that readers may find interesting.  I am one of the four caregivers cited.

There is no way I can reproduce the pictures and graphics accompanying the online article to do it justice, but readers may go to their website page if interested in reading the complete article.  Cut/copy and paste this address into your browser:
myangelshomecare.com/the-truth-about-alzheimers/


Friday, July 28, 2017

Personal Blog #1 ... 15 Months as an Alzheimer's Widower

        
It’s been 15 months since Clare passed away, but despite “moving on” with the rest of my life I still sometimes find myself dealing with mild depression.  I had expected to occasionally feel very emotional at times when viewing certain scenes in movies or on television, or when listening to certain music.  But I had not expected to continue to occasionally experience brief but very intense feelings of painful loss and weepiness.  Obviously, I was wrong.  

I attended several “recently widowed” support group meetings but felt that I had little in common with the others in my group.  Perhaps it is because many widowed Alzheimer’s disease (AD) spouses have already gone through years of “anticipatory grief” while watching their loved ones slowly die before their eyes.  Others in my group were dealing with their spouse’s unexpected death, but I had already felt widowed in many ways during the 3 years when Clare was living in an assisted living facility and nursing home prior to her death.

When Clare had been in early to moderate stages of AD, I had participated in a very helpful weekly support group exclusively for AD spouses.  Unfortunately, no support groups exclusively for widowed AD spouses seem to exist.  I cannot say with certainty that such a group would have been, or would now be, helpful to me ... but I wish I had the opportunity to find out.

It’s not that I have become a social recluse.  I socialize with others in three weekly bowling leagues, I exercise several times each week at a local Y, and I usually go out to eat at least twice a week with family or friends.  But I think I would be further ahead in my “moving on” and suffer fewer periods of mild depression if I could meet someone with whom I could enjoy a more special relationship several times a month. 

I suppose that I could try online dating to increase my chances of meeting a special someone, but I just don’t want to do that.  I did go to several social mixers and activities for "sociable seniors," but too many women my age (70) or younger seemed to be looking for serious relationships and I’m not looking for that.  After living alone for four years, I have come to enjoy my ability to do what I want when I want. 

What I really want, I suppose, is a “friend with benefits” ... a woman to enjoy being with as a friend while also enjoying a physical relationship.  But I do not want a FWB to be with me every day or even several days a week.  I just don’t want that serious a relationship.  However, if I could be with someone truly special a few times a month, that would be perfect.

Some surviving AD spouses have been helped by therapists to deal with their grief.  For me, writing has always been my therapy.  I found it very helpful to maintain a journal for nearly 10 years while dealing with Clare’s AD, so I thought that writing about my current feelings would be helpful. 

When I finished this journal entry, I thought that maybe other widowed AD spouses with similar feelings might find some comfort just by knowing that they are not the only ones who feel as they do.  So I decided to post this journal entry today just on my own site as Personal Blog #1.  Whether or not there will be a Personal Blog #2, or any additional personal blogs, remains to be seen.
 

If you’d like to comment on this blog post and have me reply, please email me directly at acvann@optonline.net and write “AD blog” in the subject line.  I truly hope that someone out there may be helped by reading this blog as I was helped by writing it. 

Tuesday, June 20, 2017

Dementia Resident Care Transition Strategies

My late wife, Clare, had Alzheimer’s disease and spent two and a half years in the lockdown dementia wing of an assisted-living facility (ALF) and two months in a nursing home (NH). New facilities meant new faces and establishing a new protocol for communication between myself, Clare’s caregiver, and staff routinely responsible for Clare’s care. These experiences showed me that a few small changes in facilities could make these transitions much easier for new residents and their caregivers.
1.  Issue a staff list to caregivers
When I first met with ALF and NH admissions staff, I was given a folder with lots of helpful information. However, after Clare was admitted, I never received a list of the specific personnel responsible for Clare’s care. While I was introduced to the social workers in both facilities, the dementia unit director in her ALF, and the supervising nurse in the NH dementia unit during the intake assessment, I was never given direct-line phone numbers and email addresses in the event that I may need to contact them. Having a list of Clare’s aides in each facility and names of the other nurses in her NH unit would have also been helpful. 
With this additional information, I could have more easily familiarized myself with the names and faces of those responsible for Clare’s care and known who to speak to about concerns. I eventually obtained most of this information without any assistance from management at either facility but only after investing much personal time and effort. I never did receive information on how to contact Clare’s NH doctor directly, forcing me to repeatedly leave messages for the doctor at the front desk. Providing caregivers with names and contact information will help reduce caregiver stress and also improve patient care.
2.  Provide highly visible name badges for personnel
Many ALFs and NHs provide personnel with badges where the name of the facility is very prominent, but the name of the individual is typed in comparatively small font size; the employee’s title is often even smaller. Now I have 20/20 vision but, in order to read names and titles clearly for most personnel, I had to get very close to each person, almost violating their personal space. I know that ALFs and NHs are proud of their names and want to market their names, but what is important to caregivers 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
ALFs should consider supplying name badges for residents in their dementia units. Prior to her entrance into her ALF, Clare attended social day care programs at various sites. Upon arrival at each site, she and all the other participants were given name badges that were then collected at the conclusion of their program. This was very helpful for Clare because even though at this stage of her cognitive decline she could no longer remember names, she could still read the names (first names only!) on those badges and interact with fellow participants by name. Name badges would have allowed Clare to know who she was interacting with and allowed me to readily identify and interact with her friends during my daily visits.
4.  Establish a monthly meeting schedule with caregivers
When I worked as an elementary school principal, busy parents always knew that they had the opportunity to ask me questions at the monthly PTA meetings. I can understand the reluctance of ALF/NH administrators to add more meetings to their busy schedules. However, dementia unit administrators should provide a monthly opportunity for caregivers to meet with them to discuss general concerns or offer suggestions for improvement with respect to routines, activities, medication protocols, etc. More communication between caregivers and ALF/NH administrators can only be more helpful.
_________________________________________________________________
Dr Vann is a frequent writer in caregiver magazines, medical journals, and in major newspapers. After his wife, Clare, was diagnosed with early onset Alzheimer’s disease, Dr Vann made it a point to increase public awareness of Alzheimer’s and to help fellow caregivers. You can read his other pieces at www.allansvann.blogspot.com. If you would like Dr Vann to respond to questions or comments about this article, please email him directly at acvann@optonline.net

Published in Annals of Long-term Care, June 20, 2017.  Access online only at: 
http://www.managedhealthcareconnect.com/blog/4-tips-enhance-dementia-resident-care-transitions

Wednesday, May 10, 2017

Is Your NH Visitation Policy in Compliance with Federal Law?


“What are your daily visiting hours?” was one of the many questions I asked the intake person in a New York (NY) nursing home (NH) office last year before my late wife was admitted. I was told that I could visit each day between 10:30 a.m. and 8:30 p.m. I was also given several booklets explaining patient rights, administrative policies, and various NH routines, but nothing in any booklet discussed visiting hours. Those same visiting hours, 10:30 a.m-8:30 p.m., were also posted by the entrance desk where visitors had to sign in and out. Twice I came at around 10:15 a.m. and each time I was asked to wait in the lobby until 10:30 because I was “too early.”

Imagine my surprise when I recently learned that I should have been told that I could visit my wife anytime, day or night, as long as she wanted me to be there. Every NH in the United States that accepts Medicare/Medicaid funding, I now know, must allow immediate family members 24/7 access to visit residents.

Section 483.10 (j) (1), subsection vii of the Federal Nursing Home Reform Act of 1987 guarantees visitation rights at any time for immediate family members of NH residents. Whereas the law does state that non-immediate family visits may be subject to “reasonable” restrictions, "immediate family or other relatives are not subject to visiting hour limitations or other restrictions not imposed by the resident."

In 2009, The Center for Medicare and Medicaid services (CMS) attempted to clarify the meaning of subsection vii of Section 483.10 (j) (1) in “Guidance to Surveyors of Long Term Care Facilities.” CMS provided “Interpretive Guidelines,” emphasizing that “Immediate family or other relatives are not subject to visiting hour limitations or other restrictions not imposed by the resident." CMS further provided one question that NHs must be able to answer in the affirmative to be in compliance with federal law: “Do residents and family members know that they are able to visit 24-hours a day?"

CMS also provided revised guidelines that became effective in November 2016 that broadened NH visitation policies. They said, in addition to the provision allowing unrestricted access by immediate family members, NH residents now also have the right to “have visitors at any time, as long as you want to see them, and as long as the visit doesn't interfere with the provision of care and privacy rights of other residents." Similarly, the “Visitors” section of Medicare’s “Skilled nursing facility rights” document now states: “You have the right to spend private time with visitors at any reasonable hour. The SNF must permit your family to visit you at any time, as long as you want to see them.”

New York State NH Regulations
Once I learned about federal law pertaining to 24/7 access to residents by immediate family members, I went online to access the New York State Department of Health regulations for NHs. Surely, I thought, NY had sought a waiver from federal law as it pertains to family visits in NHs; otherwise, why would I have been told to restrict my visits (at one of the best NHs in our state) to between the hours of 10:30 a.m. to 8:30 p.m.

What I discovered was alarming. NY Health Department regulations mirror the federal visitation guidelines in all but one respect: there is absolutely no mention that NHs must provide immediate unrestricted access for immediate family members. The NY visitation regulation states that residents may have visitors, with their consent, “subject to reasonable restrictions and [their] right to deny or withdraw consent at any time.”

The NY Health Department issues a document, “What to Look For When Visiting a Nursing Home,” to help consumers select a good NH for their loved ones. In the section, “Following is a list of some policies to check,” visitation rights are only mentioned in one phrase: “visiting hours should cover a 10-hour period including 2 meal times,” but there is no mention of checking to ensure that the NH provides unrestricted access by immediate family members.

I then contacted the Commissioner’s office of the NY Health Department to ask one question: Has NY sought a waiver from the federal government regarding NH visitation rights, or is NY simply out of compliance with federal law?

I ended up being referred to and speaking with thirteen different individuals in the NY Health Department before one official was finally able to answer my question. She said, “of course NY is in compliance with federal law.” When I noted that the subsection on unrestricted visitation rights by immediate family members does not appear in the state guidelines, I was again assured that the state was in compliance despite no mention of unrestricted access.

When I then related my personal experience, I was told that I could file a complaint! When I asked if the official thought a clarification should be added to the Health Department guidelines, she said that was unnecessary. Incredulously, to me at least, she said that NHs should make visitation guidelines clear but there is no state regulation requiring them to do so, and there is no state requirement for NHs to have anything about unrestricted visitation rights in writing.

Telephone Survey of 10% of NHs in NY
I then decided to contact NHs directly to find out if the situation at my late wife’s NH was unique or if many other NY NHs were also not informing consumers of their right to unrestricted access for family members. I went online again at the NY Health Department website to find a list of all 624 NHs in New York.

I called every tenth NH on each list, 63 NHs altogether, providing me with a good sample size of 10% of all the NHs in NY. (I actually ended up calling 70 NHs because 7 NHs did not answer, even though all calls were made on Saturday or Sunday afternoons between noon and 4 p.m.). I also made sure that each NH was Medicare/Medicaid certified and therefore subject to the Federal Nursing Home Act regulations allowing unrestricted visitations for immediate family of residents.

I asked one question at each NH, and if not given complete information I asked a second question. My first question was, “Can you please tell me your visiting hours?” If told that the NH didn’t have any set hours, hours were 24/7, I can come anytime, or a similar response, I simply said “terrific” or “that’s excellent,” said thank you, and hung up the phone. If given a set time for visits, eg, from 8 a.m. to 8 p.m., I then waited several seconds to see if they would say something like, “unless you are an immediate family member.” None asked me that question, but a few did hang up and I had to call them back! After that pause, or call back, I asked a second question: “If I place my mother at your NH, can I visit her on the way to work an hour before visiting hours begin (whatever time they gave me, I’d pick an hour earlier; so if they said visiting hours begin at 8, I’d ask if I could visit at 7.) I asked the same about visiting on my way home from work at an hour after the limit time they provided.

Survey Results
Results were very disappointing. Given pre-existing federal law and recent updates, every Medicare/Medicaid eligible NH in every state in 2017 should respond the same way when asked about visiting hours for residents. The policy in every NH should be that there are no set times to visit; all visitors may come anytime, 24/7. Immediate family members should face no restrictions, but all other visitors may be asked to wait temporarily if a provision of care or privacy rights of other residents should apply at that time.

Of the 63 NHs I contacted, only 24 responded correctly to my first question by saying that I can visit anytime. When I asked my second question at the other 39 NHs, responses were of five types: ignorant, encouraging, discouraging, very discouraging, or absolutely out of compliance.

Ignorant responses were variations of “I’m not sure” and when asked to check they would return to the phone and continue to say they weren’t sure. Encouraging responses were like this: “Yes, but the doors are locked before and after those times, so just ring the bell and someone will let you in.”

Discouraging responses were often like this: “You can try to get permission from a social worker or a supervising nurse; if we have that permission on file, then someone will come to open the locked door at those times.” Or, “We try to avoid that, but usually we’ll usually let you in.”

Very discouraging responses were often like this: “Our doors are locked and the person with the keys is at a fixed station and doesn’t walk around that much. So you can ring the bell but it may take a long time before anyone comes to let you in.”

However, 5 responses were completely non-compliant with federal law, all variations of “no” such as ... “I’m sorry, but our doors are locked before _ a.m. and after _ p.m.” Or, “No, you must come between those times.”

Obviously, NHs in NY have not yet gotten the message that since 1987 immediate family have been allowed to visit with their loved ones whenever they want, and now other visitors may also visit at any time, albeit subject to some possible restrictions due to resident privacy and care issues. Posting limited visitation hours is not in accordance with federal law, unless those posted visiting hours say 24/7 or “come visit your loved ones anytime.”

For immediate family members and relatives of loved ones placed in NHs in New York, it is both outrageous and sad that so many NHs are actively violating the law and illegally restricting and/or discouraging visits from caring family members.

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

Published in Annals of Long-Term Care, May 9, 2017.  Access online only.  Access at: http://www.managedhealthcareconnect.com/blog/your-nh-visitation-policy-compliance-federal-law

Note:  Direct links to all sources quoted in this article appear in my blog at the Annals access site.

Thursday, April 20, 2017

Tips for Improving Caregiver Communication In ALFs and NHs

When making assisted living facility (ALF) and nursing home (NH) placements for loved ones, families relinquish their roles as primary caregivers, entrusting that role to institutional staff.  Staff must realize, however, that some family caregivers will still remain actively involved with their loved one’s care.
The last thing an ALF/NH administrator wants to hear is how his or her facility is developing a reputation as one where caregiver concerns about their loved ones are ignored by an uncaring staff. This is a sure way for bad PR to raise its ugly face in community discussions as well as possibly lead to negative facility reviews online. This is especially harmful if such perceptions are formed as a result of the actions—or inactions—of just one or a few staff members who do not do their jobs properly or who fail to respond to caregiver communications in a timely fashion. All staff must be on mission, not just most staff.
One of the institution’s goals should always be to provide as much appropriate information to caregivers as possible in a timely manner. Caregivers should always be informed whenever there are significant changes in their loved one’s health, behavior, or routine practices. In addition, should there be a problem, inform the concerned caregiver immediately—don’t wait for either the problem to escalate or for the caregiver to find out before being informed. Caregivers should also be informed should there be a significant program or staffing change.
Below are some detailed examples of and strategies for effective communication.
Report on resident/patient behaviors
Family caregivers should be informed whenever there are significant changes in a resident’s daily routines, health, or behavior. For example, I can recall when I noted significant changes in my wife’s sleeping and eating habits. When I brought my concerns to the attention of administrators, I was told that those habits had changed several weeks ago. Excuse me? Why wasn’t I informed of those changes instead of being left to discover them by myself?
One easy way for supervisors to communicate effectively with concerned caregivers may be to do something similar to what many teachers do for concerned parents. Many teachers send home a weekly check-off sheet noting relative behaviors; the teacher places a check mark or “x” in each box to indicate satisfactory or unsatisfactory progress. In a matter of a few seconds, the teacher can briefly communicate with parents, who can then follow up if more information is desired. ALF/NH supervisors could issue similar brief weekly check-off forms for caregivers who want to be kept informed about changes in sleeping, eating, socializing habits, or one or two other areas.
Hold informal get-togethers with family caregivers
Provide coffee and cookies and invite all concerned caregivers to meet with you and your top administrative staff two or three times each year. Such settings allow you to share information about significant changes that are coming or have recently been implemented. These do not have to be lengthy meetings, just long enough for you to inform caregivers, highlight institutional or staff accomplishments, listen to any suggestions for change, and receive valuable feedback on existing practices. 
Announce personnel and program changes
Family caregivers should always be informed whenever there are significant changes in personnel working with their loved ones. I often saw new faces in my wife’s dementia unit, but I was never told about those changes and never given the names of new personnel, making it much more difficult for me to discuss concerns with superiors. Similarly, program time changes often affected my ability to visit with my wife; a simple heads-up about a time change in programs would have enabled me to avoid any problems. Obviously, advance notice cannot always be given. However, very often, advance notice can easily be given, it just isn’t done.
Issue an informative, monthly newsletter
ALFs and NHs routinely provide monthly calendars of events and daily activities for their dementia residents, but few provide names of staff members or phone numbers/email addresses for administrative staff, which would help to facilitate communication with concerned caregivers. A monthly newsletter could also highlight differences in institutional practice for dementia residents as compared with other residents. For example, for the entire first year my wife was in her ALF, I would see the daily menu posted in the ALF dining room and assumed my wife was given those same meal choices each day. Only through observation at meal times did I discover that dementia residents didn’t choose their meals as did other residents. Any practice in the dementia unit—or other units—that is at variance with overall ALF practices could be clearly stated in such a newsletter, along with other helpful information for caregivers to know.

Published in Annals of Long-Term Care, April 20, 2017.  Access online only at:
http://www.managedhealthcareconnect.com/blog/tips-improving-caregiver-communication-alfs-and-nhs

Friday, April 14, 2017

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

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

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

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

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

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


Something else that helped me a lot was re-reading the “Serenity Prayer” 3 that I keep posted in my home office ... God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”  These words reminded me that I had to accept the reality that Clare was dying and there was absolutely nothing I could do to change that reality.  All I could do was make sure that Clare was receiving the best care possible and was as happy as possible. 
Those same words were just as valuable after I lost Clare ... I had to accept that she was gone from my life, but also accept the reality that I needed to move on with my new life as a widower.  I also knew I had to accept the fact that I now had to make some important decisions in my life and not dwell on what might have been or could have been.  I had to focus on what I needed to do in order to give myself the best opportunity to live a reasonably happy and healthy life as a widower.
I also came across some very wise words from Swiss psychiatrist Elisabeth Kubler-Ross, who wrote this about grief: “The reality is that you will grieve forever.  You will not ‘get over’ the loss of a loved one; you will learn to live with it.  You will heal and you will rebuild yourself around the loss you have suffered.  You will be whole again but you will never be the same.  Nor should you be the same nor would you want to.” 4

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

When I read those words, I literally looked at a picture of Clare and cried ... but I also smiled, recognizing how incredibly lucky I was to have been with Clare for all those years, and how instead of mourning her loss each day I should feel incredibly happy and lucky that I shared 51 years with her.  I know that I will grieve forever, but each month I am making progress in learning how to live with that grief.
  
These inspirational thoughts continue to keep me going even now.  I sincerely hope that one or more of these thoughts may also bring solace to others.  A caregiver watching a loved one die of a degenerative disease such as Alzheimer’s ... a disease that is without any hope of “remission” or “survival” ... cannot avoid deep emotional pain and anticipatory grief.  An Alzheimer’s widow or widower may find that pain and grief remaining for a long time after the death of a loved one. 

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





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



Tuesday, March 14, 2017

10 New Year's Wishes for Alzheimer's Caregivers

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

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

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

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

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

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

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

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

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

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

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

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

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

Free Respite Opportunities for Alzheimer's Caregivers

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

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

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

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

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

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

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

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

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

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

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


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




Alzheimer's and the 21st Century Cares Act

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

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

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

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

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

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

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

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