Close Caregiver Relationship As Good as Drugs for Alzheimer's Patients
Dave
that a particularly close relationship with caregivers may give people
with Alzheimer’s disease a marked edge over those without one in
retaining mind and brain function over time. In fact, the beneficial
effect of what they call "emotional intimacy" between patient and
caregiver was on par with some drugs used to treat the disease.
This report is published in the September 2009 "Journals of
Gerontology Series B: Psychological Sciences and Social Sciences" and
is currently available online.
“We’ve shown that the benefits of having a close caregiver, especially
a spouse, may mean the difference between someone with AD staying at
home or going to a nursing facility,” says Constantine Lyketsos, M.D.
of the Johns Hopkins Memory and Alzheimer’s Treatment Center.
Researchers have long been interested in the relationships between
caregivers and Alzheimer’s disease patients, with many studies
focusing on the well-being of caregivers. However, little was known
about how the relationship affects the well-being of people with
Alzheimer’s.
To find out, Lyketsos and colleagues at Johns Hopkins, Utah State,
University of Washington, Duke University and Boston University
examined 167 pairs of caregivers and Alzheimer’s patients. The pairs
were recruited from the Cache County (Utah) Dementia Progression
Study, which has tracked hundreds of people with Alzheimer’s and other
types of dementia since 1994.
At the outset of the study, all patients scored similarly on cognitive
and functional tests. However, as time progressed, the researchers
found marked differences between patients whose caregivers had scored
their relationships as close or more distant on the surveys. Patients
with whose caregivers felt particularly close to them retained more of
their cognitive function over the course of the study, losing less
than half as many points on average by the end of the study on a
common cognitive test called the Mini-Mental State Exam (MMSE),
compared to patients with more distant caregivers. Patients with close
caregivers also scored better on a functional test called the Clinical
Dementia Rating, remaining significantly closer to baseline over time
compared to those with more distant caregivers.
Interestingly, the “closeness effect” was heightened where the
caregiver was a spouse, as opposed to an adult child or in-law.
Patients with close spouses declined the slowest overall, with scores
on the MMSE showing changes over time similar to patients
participating in recent clinical trials for FDA-approved Alzheimer’s
drugs called acetylcholinesterase inhibitors.
“We’ve shown that the benefits of having a close caregiver, especially
a spouse, may be substantial. The difference in cognitive and
functional decline over time between close and not-as-close pairs can
mean the difference between staying at home or going to a nursing
facility,” says Lyketsos.
Dave
Full text article above extracted from http://www.ShamvsWham.com
Mary Gordon
decide how close a couple is, especially when you have no measure of
what things were like before AD entered their lives, other than self
reporting...which is notoriously inaccurate when it comes to
retrospective self reported data.
It also makes me wonder if they have it backwards. They have suggested
that being close to their spouse might slow down the progression of
the AD in a person. It might be that instead wpeople with slower
progressing AD remain closer to their spouse because they are more
functional.
Seems like another study to heap pressure and guilt on caregivers.
M
A R Pickett
"Mary Gordon" wrote
> What strikes me about this study is how subjective it is. How do you
> decide how close a couple is, especially when you have no measure of
> what things were like before AD entered their lives, other than self
> reporting...which is notoriously inaccurate when it comes to
> retrospective self reported data.
>
> It also makes me wonder if they have it backwards. They have suggested
> that being close to their spouse might slow down the progression of
> the AD in a person. It might be that instead wpeople with slower
> progressing AD remain closer to their spouse because they are more
> functional.
My Dad, as far as I know, received no cognitive testing during my mother's
lifetime. We were aware of some neurological difficulties faced by my Dad,
but our awareness and our consternation increased exponentially after her
death. We realized, little by little, that she had served as a "buffer"
between him and the rest of his contacts, family, friends, md's, etc.
Theirs was NOT a mutually supportive relationship, at least for the last
35-40 years of her life. I doubt if she was much help to him in managing
the confusion of vascular dementia. But she did "ease his path" in his
other relationships. She probably made decisions, filled out shopping
lists, planned menus, scheduled house cleaning service, handled finances,
made phone calls and wrote letters. He was free to just muddle along. I
know now how hard it was for her, and I also recall with dismay that she
tried more than once to explain to me how hard it was. How they, as a
couple and individually, would have fared in the study mentioned is
interesting to contemplate.
--
A R Pickett aka Woodstock
"It's bad luck to be superstitious"
Paul Phillips, Colorado Sky Sox catcher
Read my book reviews at:
http://www.booksnbytes.com/reviews/_idx_ws_all_byauth.html
Now blogging!
http://www.journalscape.com/woodstock/
Remove lower case "e" to respond
Mary Gordon
dad.
Similar thing went on in our family. My husband's uncle managed to
buffer to the point where he covered up his wife's dementia quite
successfully from everyone. I knew something wasn't quite right with
her but there was nothing overt. Their son wasn't even tuned into what
was happening other than a little forgetfullness. I'm not sure Eric
set out to hide the truth intentionally from everyone. He was a take
charge kinda guy - and a very private one - and I'm guessing he just
gradually started taking over doing whatever she couldn't do and never
complained.
Then poor Eric dropped dead of a heart attack, and - talk about a
shocking revelation for their son. Nora was so impaired she couldn't
be left alone for a minute - couldn't even dress herself (to the
consternation of her middle aged son!!!). It was the double whammy for
the family - the shock of his sudden death, and the discovery of how
bad she was.
What terrible strain must have been on her poor husband. I can't help
but think all that stress must have contributed to his sudden end. I
wish he'd let the rest of the family in on what he was dealing with so
we could have offered some assistance and support.
M.
Alan Meyer
spouse. People are different and I'm sure there are different
reasons for doing it.
I think many married people must consider it an act of love and
loyalty to cover for their demented spouse. By covering up the
dementia, the healthy spouse is doing his best to preserve the
good image of his spouse before others. He's attempting to
preserve a normal environment for his spouse, an environment in
which the spouse is not the recipient of scorn, ostracism, pity
or institutionalization.
It seems like a generous impulse to me. It doesn't always work
out as intended. It probably does more harm than good in most
cases, but I can understand and sympathize with the sentiment.
Alan
Evelyn
news:h4t8vj$nbj$1...@news.eternal-september.org...
Good thoughts on this, Alan. My Aunt did that. She took care of her
husband till it became completely impossible. She dutifully asked him what
he wanted, treated him exactly as if he were a fully normal person right up
until they wouldn't let her take him home from the hospital because he kept
falling and she kept calling the police to pick him up from the floor.
They never made any provisions for anything other than her taking care of
him at home till then.
--
Evelyn
"Even as a mother protects with her life her only child, So with a boundless
heart let one cherish all living beings." --Sutta Nipata 1.8
kerry latrece
I wonder if it is possible that she wasn't 'that bad' until her
husband passed. I know that emotional stress can excelerate symptoms.
Kerry
Brick
On 28-Jul-2009, Mary Gordon <Mary_...@tvo.org> wrote:
> Re: A.R. Picketts comments about his mother acting as a buffer for his
> dad.
. . .
>
> What terrible strain must have been on her poor husband. I can't help
> but think all that stress must have contributed to his sudden end. I
> wish he'd let the rest of the family in on what he was dealing with so
> we could have offered some assistance and support.
>
> M.
My name is Howard Bricker. I'm 73 years old and the sole caregiver
for my my wife Nathalie who is 72. Nathalie is in an advanced state
of Alzheimers. 'Advanced' in this case means that she has virtually no
cognitive ability. She does not know what day, month, year or
even century it is. She can neither dress herself, bathe herself or even
use the toilet without assistance. I am fortunate that she is not mean or
abusive. In fact she tries hard most of the time to be a good patient.
Once in awhile, she feels the need to assert herself, which is usually
manifested by her refusal to do something as simple as swallowing
her pills.
I do all of the shopping, cooking and laundry. I fortunately have a
once a week housekeeper that does an excellent job, else we would
be living in a pig sty.
The point of my post is that Florida has a Department of Elder Affairs.
I suspect that most states have a similar organization at the state level.
A few months ago, I decided that I could not go on indefinitely without
help and after a bit of googliing I contacted the Department of Elder
Affairs. I was pleasantly surprised to learn they are extremely well
organized and well connected with the Department of Children and
Families (DCF) that is the source of management and funding for
all state managed family support functions. They're the same people
that manage food stamps and medicaid.
The screening and approval cycle can be quite lengthy unless one
is computer literate, but in my case, I cut it to a little over two weeks
by utilizing my online correspondence, and personal copying and FAX
facilities.
I was given a list of support companies under contract to DCF and
required to choose one as my ongoing support agency and manager.
The type/kinds of support vary from company to company, but I was
also given a spreadsheet like matrix from which to compare them and
choose the one that most nearly meets my requirements. I will meet
with the assigned personal care manager next Monday to work out
the details of my requirements and set up a schedule. I expect to get
help with personal hygiene for my wife, laundry and oversight of
our medications. I will also get some 'respite' help. I think that means
baby sitter service while I get some time off.
I encourage anyone needing such support to search out your state
department of consumer affairs and work from there. You don't
have to be financially destitute to get help. You don't have to give
up your house or car or even your satelllite TV.
--
Brick said that
Justin Hale
"Brick" <hrbr...@NOSPAMverizon.net> wrote in message
news:G5SNm.5986$kY2....@newsfe01.iad...
You, sir, are a prince! I realize it even if your wife cannot. Blessings
to you and to her.
Ken Bland
Lynn Lynn
for my 92 year old mother until she passed in September.
No one can imagine what being a caregiver for Alzheimer's patient is
like unless they have experienced it. That is why I found (and still
find) comfort in this newsgroup.
My mother talked of being cold (instead of hot as your wife does) and it
was 90+ degrees outside. I always had to keep the A/C off or turned
high and bundled her up. She complained of her head "feeling bad".
As far as swallowing pills - I found she was having difficulty
swallowing them - NOT that she wouldn't.
I hope you will continue to post here as you will find much comfort and
friendship as I did. Don't know what I would have done without the
people in here.
May you have the strength you need to continue caring for your wife!
God Bless.
Lynn
Brick
Thank you Lynn. I had just called up the group when I discerned that
my attention was needed for a number two cleanup. We're having
tuna steaks tonight and I had just finished assembling a marinade
recommended by somebody on food network. I have a yearning
for home fries, so I'll fix some lightly seasoned with onion and garlic.
Lastly, I plan some tender asparagus sauteed in butter. There will
be only three items on DW's plate. Additional items cause utter
confusion and tend to result in not eating at all. In any case, she will
eat one item at a time until it is gone before proceeding to the next
random choice.
I caution anyone who feeds or monitors the feeding of a late stage
alzheimers victim to severely limit the choices visible to the patient.
A hospital tray with its miriad of items is so confusing as to cause
panic and refusal to eat anything at all. Nathalie has been hospitalized
at least three times. Each time, she lost ten or more pounds in two
weeks or less. At home, she doesn't vary more then a pound or two
and maintains about 15% to 20% of fat by body weight. She's 5' 4"
and stays right at 115 lbs while at home.
On a bright side, I just set some kind of record in getting medicaid
support for DW approved. Fifteen days from start to final
approval. Initially, I will be getting help with baths, dental care
and respite care for myself. I'll finally get a break once in awhile
with someone dependable to watch DW while I goof off some
where. That sounds kind of petty I know, but in the near future
I'm going to really need this support structure in place. DW will
not improve. We all know that the disease is terminal. Deterioration
is visible on a week to week basis. Deal with it. The final phase
will be hospice and there's no way around that that I can see.
Unfortunately we don't have Ronald Reagen's resources to
maintain a terminal patient at home.
I will keep her at home for as long as it is reasonably possible.
I now have a care manager (via medicaid) to oversee day to
day care management.
I just finished a brief interview with DW. She feels that she
is not at home. She cannot describe home. She wishes that
she were home but, has no ability to identify where/what
home is. (We have lived in this house together for seventeen
years.)
--
Brick (Youth is wasted on young people)
Lynn Lynn
"I just finished a brief interview with DW. She feels that she is not at
home. She cannot describe home. She wishes that she were home but, has
no ability to identify where/what home is. (We have lived in this house
together for seventeen years.)"
Mom would always cry to go home. She lived in the same apartment 25
years and visited me in my home for the same amount of time. We lived
within sight of each other until I moved her in with me. She did not
know it was my home she was in and didn't remember leaving her
apartment. Sometimes she would refer to home where she grew up. She
never knew where she was - often thought there were other people
"staying" here for me to take care of. (She didn't know I was her
daughter.)
That is what bothered me so much at the end because we had such a
fantastic relationship our entire lives and at the very end we were "not
together".
I am happy to hear you will get some assistance. You need time away -
that is something I did not take advantage of and I was truly burned
out.
Please keep us posted.
Lynn
Brick
I really appreciate having a sounding board among people that actually
know what this situation is like. I have succeeded in getting assistance.
I'm not real proud to use State support, but I have exceeded my
capability to do it on my own.
Nathalie had a bad day today. She went off into her own little world.
She remained at the table after a late lunch. (Her chair at the table
has a nice view of the ducks, kids and pond outside). When I
demanded to clean up the residue from lunch late in the afternoon,
she got quite upset about me taking her plate away from her. She
had plans for that plate and felt that I was depriving her of something
quite important.
For those that persist in bringing their technobable into this group
and thus disrupting the basic value of the group, you disgust me
and I doubt that your mother would think much of you either.
Lynn Lynn
and pond right outside! Often times though, Mom would see "additional"
things such as people on the roof, cars in the lake. She always saw a
"little dog" sitting in the living room and I had to "feed" it. She had
a "cat" who slept with her at night.
In the beginning, I would say I didn't see the people and animals but I
got where I would just go along with it - much easier!
I agree with you about the people that use this group in the wrong way.
Evelyn taught me to just ignore them but it is difficult when you are
dealing with such a serious illness and have to weed through their
nonsense.
I just went through my first Thanksgiving without Mom and now must get
through Christmas which was very special to us. She wouldn't have
realized the holidays though. She didn't understand about my birthday
in July.
That is what hurts - all the special times were taken away. I just wish
we could have spent our last months together as mother and daughter but
it wasn't meant to be!
Don't feel bad about taking assistance. You deserve and need it. Get
all the help you can. As I said before, I didn't and I really got worn
down.
This group suggested a book called "36 Hours" and one of the sentences
referred to the mind in Alzheimer's as like a loose light bulb in a
lamp. It flickers on and off. How true!
Try to have a peaceful week and check in with us soon.
Lynn
Adelle
"Lynn Lynn" <lu...@webtv.net> wrote in message
news:21972-4B1...@baytvnwsxa002.msntv.msn.com...
Brick - there is a concept called 'loving deceptions.' Our loved ones are
dear to us. We respect them and simply can't imagine the benefit or
rightness of 'lying' to them. But when the brain no longer functions
correctly, we must sometimes manipulate in order to do what we need to do.
And if that requires making up some sort of scenario that our loved one
would accept just so we can go about doing what we need to, then creating
that deception is important to our own sanity and their comfort. Lynn
alluding to it saying she went along with the mentioning of people and
animals. They will forget what you have said in a while and it will be as if
the 'deception' never occurred.
So next time Nathalie objects to something you need to do try finding a way
where your action would fit into her activity or delusion. Could you be
putting the food away to later feed the ducks, but don't want to keep it on
the plates because you might forget the plates at the pond? If she is
staring out the window, would she notice leftovers were thrown away instead
of saved for the ducks?
It's very much like buying into a toddler's fantastical view of the world in
order to get them to do what they need to do. No parent objects to that, and
most consider it fun. Well, Alzheimer's is a slow moving backward in the
process of maturity. Just as we attained skills in a specific order as we
grew through infancy to toddlerhood and childhood, our loved ones lose those
abilities pretty much in reverse order from attaining them. And we have to
deal with each at the stage they are 'in the moment.'
It goes against our sense of respect for the loved one we have known to
treat them like a child. But we have to choose between respecting our spouse
as they were for the many years of marriage, or loving and appreciating who
they are right now as we look them in the eyes and see their confusion and
fear. What would be unthinkable to say to the Nathalie of your early
marriage becomes the most appropriate thing to say to the Nathalie who
thinks you are foiling her very purposeful plan and can't imagine why you
might need to clear dishes of spoiling food.
It is so very sad and hard. Not only are you a caretaker, but the very
partner who would have supported you and helped you to be strong while
caretaking is gone to you. The lover who gave you joy and laughter -
feelings which would be refreshing and restorative - is slipping away little
by little and no longer there, either. It's Ok to acknowledge YOUR loss and
your sadness, the frustration and anger, and rale at the unfairness of the
universe. It is all true. Unfortunately, we just don't get to choose what we
and our loved ones have to face when it comes to health and mental health.
We just don't get to choose. All we can choose is how we care for them when
they have no idea of how difficult it is.
Lynn Lynn - the first year is hard. Be patient and kind to yourself. Cry
when it hits you. And accept however way you feel at any given time.
Wishing you both strength,
Adelle
Evelyn
"Adelle" <adstavisa...@invalid.invalid> wrote in message
news:hf3eih$ce7$1...@news.eternal-september.org...
Adelle, a beautiful, true post. You are telling it like it is.