caregiver support groups

ADI World Alzheimer Report 2012 Caregiver Survey a Must DO | Alzheimer\’s Reading Room

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ADI World Alzheimer Report 2012 Caregiver Survey a Must DO | Alzheimer\’s Reading Room.

I know that all of us want to see an end to Alzheimer’s disease.  Many of you have Alzheimer’s or other dementia, and even more of you are helping to take care of your loved ones.

Rarely has there been an opportunity to provide input in such an international forum.  This survey can be completed around the world.  It is not just intended for one country.  The primary topic of the attached survey revolves around the stigma attached to dementia.  You will be asked questions about how your loved one is treated, how you are treated as the caregiver for your loved one, etc. Your responses are entirely anonymous.  You will not be asked to provide your name, nor a physical address, nor your e-mail address.

I hope you’ll consider filling out the online survey.  It was VERY quick, so you need not spend a lot of time on the survey.

The results of this survey will appear on the Alzheimer’s Reading Room website on World Alzheimer’s Day – Sept. 21, 2012.

Caregivers: learning from our mistakes.

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“Once bitten, twice shy.”  The Chinese and Japanese proverb has a variant:  “One year bitten by a snake, for three years afraid of a grass rope.”

Perhaps Champagne is the answer?
Perhaps Champagne is the answer?

How does one who is as imperfect as myself apply this Proverb without writing an article that goes on and on into perpetuity?  All of us can think of circumstances in which we fail to learn by experience and continue doing the same stupid/inadvisable thing over and over again expecting different results.  As I said, my life is rife with examples, but this article centers around caregiving – especially as it applies to caring for someone with Alzheimer’s or other dementia.  CAVEAT: I would never write on something about which I had not experienced.  I’ve been there.  I’ve done that.  I’ve paid for my mistakes.

I’m so tired of my spouse/father/mother asking me the same question over and over again and supplying her with the same answer over and over again!

Anyone with a loved one who has any type of dementia has lived in this unending vicious cycle.  We think that if we just answer the question one more time she’ll remember and not ask the question again.  Or we think that if we just spoke louder – or slower – she would certainly remember and life would be infinitely improved.  Not happening.  Answer the question once, and then move on to another topic.  Change the subject; redirect your loved one by doing something that will distract her; or simply don’t respond at all.  What ever you do, don’t aggravate the situation by reminding her that you’ve already answered that question numerous times so why don’t you stop already!!!???  Take a deep breath and remember: your spouse isn’t the one asking questions over and over again and frustrating you beyond all measure – the disease is asking the questions.  I know – intellectually you understand that concept, but your eyes see and hear your spouse pestering you for an answer over, and over again, so it’s very difficult to get beyond the emotion of the situation. Read the rest of this entry »

Denial: Roadblock to better health and better care.

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STATEMENT:  Carol’s having a little problem with her memory.
Initially this might be an accurate statement.  Two years later, it’s a euphemism that doesn’t benefit anyone, the least of which is Carol.

Imagine denying a person’s cancer diagnosis.  There’s no need to treat it.  I just have an uncontrolled division of abnormal cells in my body.  It’s not that bad.  It’s early in the diagnosis anyway and I’m not even experiencing any major symptoms.  I’ll do something about it when it really gets bad.  Ill-advised, right?  Most people would not follow that path.  But Alzheimer’s disease, and other dementia, are no less serious.  As a matter of fact, cancer isn’t always fatal, but Alzheimer’s is.  There is no cure and no potential for one at this time.

Most people would spring into action upon receiving a cancer diagnosis: learning as much as possible about it; taking measures to curtail  the cancer’s effects on their lives.  The sooner one does something about it, the better the chances of successful treatment.  For some reason, when a person receives an Alzheimer’s diagnosis there’s a self-inflicted stigma attached to it; as if the afflicted person brought the condition on themselves.  This is an unfortunate perception and one that should be put to rest.  Whereas clinical depression or mental illness used to be a taboo subject, those conditions are now more readily accepted in the public eye.  Alzheimer’s must be brought out into the open, especially as it affects you or a loved one.

THREE MAJOR REASONS WHY ONE SHOULD ACT ON AN ALZHEIMER’S DIAGNOSIS:

  • The window of opportunity to start early drug therapy can be a very narrow one.

The time to seek medical assistance is when symptoms become fairly consistent and more than just a “senior moment.”  A thorough medical exam should be conducted to rule out any cause other than dementia.  Some medical conditions and/or medication usage can mimic cognitive decline.  All the more reason to act early to rule out what might be a readily fixable temporary condition.

If after the thorough medical exam a cognitive workup is warranted, you’ll have a defined cognitive baseline and can start treatments and/or make adjustments in the household that will minimize the disease’s impact on your lives.  Now you’re in the driver’s seat, regaining some amount of control over the disease.

  • Those close to you need to be informed.

As mentioned in an earlier post, “Caregiving: The Ultimate Team Sport” (article located in the “Caregiving” tab) you can’t assemble a care team if you’re ignoring the needs and challenges facing you and your loved one.  You’ll be amazed at the relief you’ll feel knowing that you’re not battling this disease on your own.  Let your family and close friends know early on what you need from them.  Partner with them to become a formidable force upon which you can rely.  You need support and it’s available from several resources.

  • Join a local Alzheimer’s Association support group.

The Alzheimer’s Association lists support groups in most geographical regions that should prove extremely helpful to you.  Type in your zip code in the “Find Us Anywhere” upper right area of their website and you’ll be connected with the Chapter located nearest to you.  Within that local Chapter you’ll then be able to search for a support group by typing in your city, county,  or zip code.   You’ll find groups for family members who are attempting to support their loved one who has received a dementia diagnosis.  You might also find support groups for patients who are in the earliest stages of their illness.  Both groups can do much towards providing you with confidence and hope when none can be found.  These groups become a practical resource into which you can tap to benefit from others’ experiences in managing the disease.  If by chance there is no nearby Alzheimer’s Association Chapter, check with your local hospitals, community colleges, senior centers, and the like as they oftentimes hold groups that are facilitated by trained professionals.  These alternative groups are very adequate options when no other groups are available.

If you or a loved one has received an Alzheimer’s/dementia diagnosis, you’ve just entered one of the most difficult chapters of your life.  You deserve all the support and medical attention you can get.  Ignoring the condition doesn’t make it any less real so please take the steps needed to manage this stage of your life effectively.

The next article in this “Understanding Alzheimer’s & other dementia” series is : “Driving with dementia: the dangers of denial.”