Caregiver Support Groups

In those first weeks and months after an Alzheimer’s disease diagnosis, caregivers have many questions, fears, and concerns about confronting upcoming changes in their lives.  I know this from personal experience because I am a caregiver for my wife, Clare, who was diagnosed with early/young onset Alzheimer’s disease at age 63. 

Immediately after Clare’s diagnosis, I had many unanswered questions.  Is it still safe for Clare to continue driving?  Is it still safe for me to leave Clare alone at home?   Are there any special medications that should Clare start taking?  Should I contact our attorney to see if we need to update any of our end-of-life documents … will, living will, health care proxy, and durable power of attorney?

I knew that these types of questions and many other issues are routinely discussed in caregiver support groups.  However, it is not always easy to find a local caregiver support group.  The Alzheimer’s Association provided more than thirty different caregiver groups on Long Island, but none were specifically for spouse caregivers.  Eventually, I was fortunate to find a support group solely for spouse caregivers at the Long Island Alzheimer’s Foundation (LIAF) in Port Washington, NY.  This group, led by a gifted social worker, met every Tuesday afternoon and would soon grow to 15 participants ranging in age from the late 50s to the mid-80s.

Regardless of age or gender, we all “got it” in my spouse caregiver group.  We were dealing with many, if not all, of the same behaviors and although each of our individual situations were somewhat different, it was helpful to learn how others were handling similar situations.  Those like me, whose spouses were then in the earliest stages of Alzheimer’s, received much wisdom from those who had already dealt with such issues.  We also learned about strategies that others used with spouses at more advanced stages, knowing that one day we might also have to deal with similar situations.  All spouse caregivers are swimming in the same lake; we may be paddling in different boats at different speeds, but we are all trying to stay afloat in Lake Alzheimer’s.

I absorbed many practical bits of advice each week as we shared and discussed everything on our minds … new and worsening behaviors, medications, and any other topic of concern.  We could laugh, cry, and say whatever was on our minds in a totally non-judgmental environment, receiving emotional support and helpful suggestions for dealing with whatever issues confronted us. 

After three years I had to stop attending my support group so I could take Clare to a day care program in a different location on that day, but I haven’t completely severed my group ties.  Each week I now join up to a dozen current and former support group members for lunch.  All of our spouses are now either in moderate or severe stages, or have already passed on.  But just as we once did in our formal support group, we continue to support each other.  As one member of this informal group recently said to me, “This new group just seems to scratch every itch I have!”

As the numbers of people diagnosed with Alzheimer’s disease increases dramatically, we will need to provide more weekly caregiver support groups.   Doctors must become more familiar with support groups available to their patients and caregivers. Clare and I saw an internist, a neurologist, and two geriatric psychiatrists, yet none of them mentioned anything about joining support groups.  In my LIAF spouse support group of 15, only one had been referred there by a doctor.  That is a shame.

Doctors working with someone who is caring for a spouse, parent, grandparent, friend or other family member with Alzheimer’s disease should urge them to join a support group.  Let them know that they can learn many practical suggestions from those who have “been there,” and how important it is to have a place where they can talk openly about their feelings, fears, and concerns while receiving emotional support from others “who get it.” 

Caregivers should not have to “go it alone” when a loved one is declining from an incurable disease.  But unless doctors inform them of the existence and value of support groups, many who would find emotional and practical help there will lose out on this wonderful source of information and comfort.

Published in Journal of the American Geriatrics Society, August, 2013, Vol. 61, No. 8, p. 1413.  Access at:

http://onlinelibrary.wiley.com/doi.10.1111/jgs.12369/full

Alzheimer's and Baby Boomers

My wife has Alzheimer’s Disease (AD).  Only 63 when diagnosed last year, my wife is technically classified as having EOAD ... Early Onset Alzheimer’s Disease ... a tag given to those who are diagnosed before the age of 65.  According to the Alzheimer’s Association, 5.3 million people in this country currently have AD and 200,000 are younger the age of 65.  What is really scary is that with 10,000 baby boomers turning 65 each day starting next year, and with no cure currently in sight, some health experts have estimated that we may have as many as 16 million people suffering from AD by 2050.  The medical profession, and helping organizations such as the Alzheimer’s Association, must change some current practices to deal more effectively with the growing number of ‘‘boomer patients’’ they are soon going to see.

The Alzheimer’s Association currently provides many day care activity programs for those with moderate to severe stages of AD, and that is a good thing.  However, there is virtually no support available to those with EOAD or for those in the earliest stages of AD.  As but one example, here on Long Island, NY, where the Alzheimer’s Association estimates that there are 55,000 people with AD, they currently offer 35 groups for spouses and/or caregivers and many day care program opportunities for those with AD.  However, they provide no support groups for people with AD.  Not one.  This is pretty much true for the entire country ... many activity groups but few support groups for those with AD.  One explanation given to me is that people with EOAD and early stage AD often do not want to talk about their feelings with others ... they find it too depressing. And that may well be true.  However, what about those in early stages or with EOAD who do want to talk with others in similar circumstances?  Shouldn’t there be at least a few support groups led by trained social workers available to them?

Fortunately, here on Long Island we also have LIAF, the Long Island Alzheimer’s Foundation, which does have groups for those in early to moderate stages of AD and a separate group for their spouses/caregivers.  My wife and I attend these weekly meetings and find them very helpful.  But not even LIAF has a group solely for those with EOAD or for spouses of those with EOAD.

As is true for each successive generation, we boomers are quite different from our parents in many ways.  Having grown up with computers and the internet, many of us are quite knowledgeable about AD through online sources of information, and some of us, at least, would like to meet with others in similar situations.  Unfortunately, presently throughout much of this country, there are no such opportunities. This must change. 

The medical profession must also change. As is true for many eventually diagnosed with AD, my wife began exhibiting AD symptoms for several years before the official diagnosis was made.  I told doctors about her worsening symptoms at each visit, but my comments were routinely ignored.  I noted how she kept asking me the same question over and over without any recollection of having just asked me that same question minutes earlier.  I mentioned her getting lost while driving in our community, her disorientation, her aphasia.  I said that my wife was forgetting how to do things she used to do routinely, and how she was regularly misplacing and losing objects at home and when we traveled.  However, her initial cognitive testing results were good, MRIs and blood work did not show any problems, and doctors suggested that the symptoms I described were probably due to stress, and then later to anxiety.  When cognitive testing results worsened later on, the diagnosis became severe cognitive impairment due to depression.  I continued to note that her symptoms were not related to stress or depression according to any website I had consulted, but my comments were routinely ignored.  After continued worsening of her symptoms, we eventually went for a second opinion at a hospital-affiliated Alzheimer’s Disease Research Center where the diagnosis was probable AD ... and definitely not stress, anxiety, or depression.

I’ll be the first to admit that some of the early signs of AD are identical to signs of stress and/or depression.  A doctor who diagnoses stress or depression as the cause of memory disorders can offer hope to patients.  Anti-depressant medications and stress-reduction techniques may often lead to improvement. However, a doctor who diagnoses probable AD gives patients a death sentence because AD is a terminal disease with no cure, and the average person diagnosed with AD lives for only 8 years.  I wonder whether some neurologists and cognitive psychologists think, why not treat the problem as if it were stress or depression since we may be able to help the patient improve; if I diagnose AD, then there is no hope for improvement.

Many AD spouses I have contacted across the country on websites devoted specifically to spouses of those with AD have, sadly, reported identical experiences with their doctors.  So many reported that their observations were also ignored that I must conclude that this may be common practice ... doctors basing their diagnosis and treatment recommendations solely on objective testing results after relatively brief visits with patients, largely disregarding anecdotal observations of spouses and caregivers.  This needs to change!  Empirical data from cognitive testing and medical procedures are very important but so are anecdotal and observational data from spouses and caregivers who observe noticeable changes in the patient’s daily life.  Empowered by information readily available on the internet, baby boomers may have valuable insights to offer doctors about their loved one’s symptoms that may not be apparent in brief office visits or demonstrated on objective tests of memory.

Alzheimer’s Disease takes a terrible toll on those suffering from the disease and on their spouses/caregivers.  Doctors must listen more carefully to symptoms of patients reported by their spouses/caregivers so those with probable AD are diagnosed early and can begin taking medications that may help slow the inevitable degenerative progression.  Doctors as well as local/ national AD organizations should also be working together to provide patients with ready access to support groups as patients progress though the stages of this fatal disease ... and helping to better meet the needs of those who are diagnosed at a young age and/or are in the very early stages of the disease.

Published in American Journal of Alzheimer's Disease & Other Dementias, September, 2010, Vol. 25, No. 6, pp.477-478.  Access at:
http://aja.sagepu.com/content/26/2/93.full.pdf+html

Ten Things You Should Do When the Diagnosis is Alzheimer's

Alzheimer's Disease (AD) is, admittedly, sometimes tricky to diagnose.  Since a positive diagnosis can only be made post mortem upon examination of the ‘plaques and tangles‘ and deterioration/shrinkage of the brain, diagnoses of AD are often issued with the caveat, ‘probable’ AD.  However, for patients diagnosed with ‘probable’ AD and their caregiver spouses, such diagnoses are not probable ... they are very real. And those diagnoses are rising in record numbers as baby boomers age.  An estimated 5.3 million people in the U.S. already have AD, with those numbers expected to double in the next 20 years.  This year alone, global costs of dementia are expected to exceed 1% of world GDP for a staggering total of $601 billion dollars, with more than half of that number solely due to Alzheimer's, the most common form of dementia.

Primary care physicians, internists, neurologists, psychologists, and psychiatrists are all doctors who may make probable AD diagnoses for their patients.  I am the spouse/caregiver of an AD patient.  My wife wasn't diagnosed with AD until age 63,

but she had been demonstrating many AD symptoms by age 61. For two years, however, those symptoms had been incorrectly attributed to stress, anxiety, or depression.  It is obvious to spouse/caregivers in my weekly and online support groups that doctors can and should be doing a better job of diagnosing AD sooner ... and a much better job of providing their patients and spouses with a lot more information at the time of diagnosis.  Here's a "Top Ten" list of things that I and most caregivers I know wish doctors would do when issuing a diagnosis of AD.

1.  Do not use only objective data to try to make a correct diagnosis.

Members of my support group literally laugh out loud when someone brings up the MMSE (Mini-Mental State Examination), perhaps the most widely used measure to help diagnose Alzheimer's.  Doctors should understand that this test, and others like it, measure only selective elements of memory and cognition.  Some AD patients will do relatively well on these tests on any given day even when that patient's ability to function in the ‘real world‘ is continuing to decline.  Answers to questions such as what day of the week it is, what is today's date, etc. may simply be dependent upon whether or not the patient watched the TV news that morning or looked at that day's newspaper in the office.  Patients may be able to recall a series of random numbers in sequence on a particularly good day yet be unable to recall their own phone number or date of birth.  On a ‘good day’ a patient may be able to spell the word ‘world’ backwards yet be aphasic during conversations at home.  Objective test results will vary day to day and should be, at best, only one very limited measure used to reach a proper diagnosis.

2.  Rely more upon the observations of spouses or significant others.

If you live with someone 24/7, you know  when something is wrong with your wife or husband.  More often than not, it is a worried spouse or significant other who first brings AD concerns to the doctor's attention.  More often than not, it is the worried spouse insisting upon a thorough examination of their husband or wife due to fears of probable AD.  Doctors should not dismiss these concerns lightly.  Many spouses/significant others also keep logs or journals to document their concerns for doctors, but if the doctors do not see similar symptoms themselves during their brief office visits, these concerns are often ignored.  It is the rare AD patient whose spouse/significant other hasn't seen multiple signs of AD for a long period of time prior to any official medical diagnosis.  Doctors should ask more questions of spouses/significant others and listen to what they have to say.

3.  If not an expert in AD, refer your patient to a doctor who is an expert.

Often it is the family primary care physician or internist who is the first to suspect a change in their patient's condition or the first to be approached by the patient or spouse with concerns.  If in unfamiliar territory, the PCP or internist should refer patients to a neurologist or geriatric psychiatrist with experience diagnosing and treating AD patients.  In some geographical locations, a referral to a nearby Memory Disorder Clinic or Alzheimer's Disease Research Center would be worthwhile.  Too often, it seems, a PCP/internist may correctly diagnose the patient but then give incorrect or incomplete information due to lack of awareness.  Or, worse, a PCP/internist may suggest that a patient has MCI, Mild Cognitive Impairment, thereby relieving the concerns of the patient and/or caregiver who had worried about a probable AD diagnosis without then continuing to explain that, for many people, MCI is simply the first stage of Alzheimer's ... and, for many others, MCI will eventually lead to AD.

4.  Understand that no two patients with AD react exactly the same.

We have an expression in my support groups:  “If you know one person with Alzheimer's, then you know one person with Alzheimer‘s."  Each caregiver can provide a different description of exactly what is happening to their spouse.  Are there similarities?   Of course ... there are many.  But many does not equate to all.  And, just as important, patients with AD do not all decline in the same manner.  Some stabilize at certain stages for long periods of time before conditions worsen.  Some suffer slow incremental declines whereby symptoms continually worsen gradually over time.  Others follow what I refer to as a ‘cliff fall/plateau' pattern.  They seem to ‘fall off a cliff‘ every few months with a significant worsening of one or more symptoms, then reach a plateau where the decline stops for several months, and then seem to fall off another cliff.  And still others seem to manifest combinations of patterns of decline at different times.  Doctors should explain these different patterns to their recently diagnosed patients, and their spouses, so they may be better prepared for what may come their way.

5.  Explain that we currently do not know how to effectively treat AD.

Although some may disagree and suggest that being too honest with a diagnosis will send some caregivers and/or patients into increased denial and/or result in feelings of total despair, I firmly believe that patients and caregivers are entitled to know just what they are dealing with ... despite the lack of an optimistic future.  Be honest with patients about this disease.  Explain that AD is a degenerative, fatal disease for which there is no cure.  Explain that as a terminal disease, the patient will not get better over time and symptoms will continue to worsen regardless of any treatment they undertake. Also explain that all current research indicates that remaining mentally active, improving one's diet, engaging in daily physical exercise, and a whole host of other activities may improve the quality of life and even reduce chances of heart or vascular disease ... but none of these interventions will stop the worsening progression of AD.  Explain that for some patients, medication will not do anything to help, but for some they may slow down the rate of cognitive decline for 6 months, a year, maybe two years at best.  Explain, however, that after that period of time, even if they had been effective in slowing the progress of this disease to that point, they will no longer be effective and the patient will continue to suffer cognitive decline whether still taking those medications or not.  I have started referring to all medications designed for Ad patients as having the same label ... Hope.  Doctors continue to prescribe them, and patients continue to take them, long after they can possibly still be effective.  Why?  Because doctors and patients hope that, in their individual case, the medication will work despite what the research shows.  Even when the cost of that medication results in financial hardship, many patients will continue taking ineffective medication because they hope that is better than taking nothing.

6.  Inform your patients about clinical trials.

If your patient lives in an area where there are clinical trials underway testing the efficacy of potential new treatments for AD, inform your patients and their spouses of how they can learn more about those trials.  If you are knowledgeable about one or more trials, feel free to explain why you think a particular trial might be worth considering.  But at the very least, please inform your patients and their spouses about the existence of such clinical trials.

7.  When the AD diagnosis is made, tell your patients not to drive anymore.
In a handful of states, physicians are required to report the names of patients diagnosed with probable AD to the Department of Motor Vehicles.  The DMV is then responsible for re-assessing that person's ability to continue driving.  Currently, the vast majority of patients diagnosed with AD continue to drive.  I think that a diagnosis of AD should mandate removal of a driver's license within a reasonable period of time, 3-6 months at most.  I disagree with the Alzheimer's Association, the American Academy of Neurology, and other organizations that feel that the decision of whether or not to continue driving should be left to the patient.  Wrong!   Why do I say this? Simply because we know that anyone diagnosed with AD already has, or will have, impaired judgment and reasoning skills that affect safe driving.  Multiple decisions and processing skills are in play each time someone gets behind the wheel of a weapon of limited destruction, which is what an automobile really is. Impaired drivers may still easily pass their driving test on any given day.  However, doctors know that at some point these same AD-impaired drivers who are passing these tests will suffer declining skills that will prevent their ability to drive safely.  It is not a question of if this will happen ... the only question is when this will happen.

Why must we wait for a person with AD to damage his/her automobile or that of another, cause property damage to an innocent person, injure him/ herself or others in an accident, or possibly cause the death of others, or possibly get lost while driving when all of these occurrences are easily preventable before they happen?  Without a doubt, when to take away the keys from someone recently diagnosed with Alzheimer's is often the single most difficult decision to be made.  This signals an awareness of disease and a loss of independence; it may have severe implications on that person's ability to continue working or continued enjoyment of retirement.  And that is why I suggest a period of 3-6 months be provided for that recently diagnosed patient to come to grips with his/her new reality and time to make plans to deal with the situation  perhaps arranging for someone else to drive that person to/from work or making some other alternate plans for transportation.  If we know that a person diagnosed with AD is going to decline more over time, why not admit the obvious?  And the obvious is that someone diagnosed with Alzheimer's simply should not be behind the wheel of a moving vehicle. In my support groups, we often suggest to ‘newbies’ who are first dealing with this new reality, “Would you feel comfortable with your grandchildren in the car while your AD spouse is driving?"

Too often one hears in support groups how caregivers implore their AD spouses to stop driving because they have observed firsthand that their spouse is no longer driving safely.  However, their AD spouse will often respond, “But the doctor never said I had to stop driving."  Please, doctors, take this very emotional and combative issue out of the hands of spouses.  Take responsibility for telling your AD patients that they must stop driving!

8.  Upon diagnosis, refer your patient and spouse to local support groups.

Sadly, support groups are not uniformly provided throughout this country.  Some cities and some states have local and state associations that provide a multitude of support groups for both the patients, their spouse/caregivers, and for non-spouse caregivers, often through branches of the Alzheimer's Association, the Alzheimer's Foundation, or hospitals.   If there are such groups near where your patient and spouse live, please refer them to those groups or organizations.  And if not, please consider speaking with leaders of your state's associations to have such groups formed.  Also, become aware of the excellent online support groups available that you can recommend. Spouses can go to such places as www.thealzheimerspouse.com for information and chat rooms, or to sites such as www.mayoclinic.com for a wealth of AD information and a blog site for reading and posting comments.

9.  Upon diagnosis, refer your patient’s spouse/caregiver to print resources.

Eventually, over time, all spouses learn about some good books that they should read to gain insights into this horrible disease.  Good books, like a good support group, will inform and empower spouses/caregivers.  Too often, spouses/caregivers say, “I wish someone had told me about that sooner when my spouse was still in the early stages so I could have prepared myself for the " ____________.”  (One can fill in the blank with so many choices ... difficulties when traveling, incontinence, wandering, raging, etc.)  If you are unfamiliar with good books to recommend, then at the very least prepare a one or two page informational handout to give to your patients at the time of diagnosis.  This handout can also list several websites such as those noted above, and phone numbers of local organizations ... branch offices of the Alzheimer's Association and the Alzheimer's Foundation, for example ... that can provide patients/caregivers with additional information about the disease, support groups if available, and suggested books to read.

10. Tell your patient and spouse/caregiver what they need to know sooner.

If there is one message that must get through to doctors above all others, it is this:  It is extremely important for the doctor to tell both the patient and the spouse/caregiver not what they may want to hear, but what they need to know.  Doctors must be brutally honest when discussing the progression of likely AD symptoms so patients and their spouses/caregivers will know what to expect.  Providing false hope that medications or life style changes or anything else will prevent certain death is disingenuous.  Doctors must present the scenario of symptoms and behaviors that most, if not all, AD patients will experience as their disease progresses through mild, moderate, and severe stages.  Doctors should explain that whereas the progress of AD after diagnosis can be as fast as four years and as long as twenty years, the average person with AD only lives for eight to ten years after diagnosis.  Doctors should explain how important it is for spouses to discuss end-of-life plans now, while the AD patient is still generally able to process rational thought.  Doctors should suggest that the patient and spouse seek out an eldercare attorney who can help them with decisions that must be made with respect to having a current will, living will and health care proxy, and durable power of attorney.  Doctors should suggest that their patient and spouse begin having discussions on how/where/when to provide assistance as the  disease worsens.  Should care be provided at home with hourly or full time health care aides?  In an assisted living facility?  In a nursing home?  An eldercare attorney will also discuss financial ramifications of such choices and suggest other options, but the doctor should get the ball rolling on end-of-life decisions and care because traumatized patients and spouses may not understand that this is something that needs their attention sooner rather than later.

Some doctors, I'm sure, will suggest that to hold these  discussions as soon as the patient is diagnosed is TMI ... Too Much Information.  And I agree.  The diagnosis may not be well received by either the patient and/or the spouse, resulting in reactions ranging from anger and shock to disbelief and denial.  However, I am suggesting that this information be provided in a follow-up visit no more than 2-4 weeks after diagnosis, once the patient and spouse/caregiver have had a chance to absorb hearing the words, Alzheimer’s Disease, and the bleak prognosis.  Waiting longer is a disservice to both patient and spouse/caregiver because information on stages of this disease, medications, clinical trials, driving, support groups, helpful books and resources are most helpful if provided sooner rather than later.

Alzheimer's is a horrible journey not just for the patient ... it's also horrible for the spouse/caregiver.  Doctors can make the journey so much easier for patients and spouses if they would heed This ‘Top Ten‘ list. Do you want to leave your patients and their caregivers with some hope when they leave your office after such a horrible diagnosis?  Of course you do.  Do you want to maintain a relationship with your patients/caregivers after diagnosis?  Of course you do.  However, just like a good marriage must be based on trust, so too must a doctor/patient/caregiver relationship be based upon trust.  If you feel my ‘brutally honest approach’ will backfire with respect to your patient and the patient's spouse/caregiver in their efforts to seek out the help they need to get through this disease, then perhaps you may need to cover this information during the course of several visits over a period of several weeks or months.  But, please, do cover it all because to do less is not just disingenuous.  To do less is to give your patients and their spouses/ caregivers false hope.  And that, in my opinion, is worse than no hope at all.  So, doctors ... please ... act upon some of these suggestions for dealing with your AD patients and their spouses.  Thank you.

 

Originally submitted titled, "An Open Letter to Doctors, Ten Things ..."  Published in American Journal of Alzheimer’s Disease & Other Dementias, March, 2011, Vol. 26, No. 2, pp. 93-96.  Access at:  http://aja.sagepub.com/content/26/2/93.full.pdf+html