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All too many times overwhelmed caregivers are physically and emotionally depleted and need to take time to rest and care for themselves. Believing in a holistic approach to caregiver stress and a strong commitment to helping our members find the right solutions, we created this blog to help you connect with others who, like you, may be facing the same eldercare issues and challenges. Feel free to comment, ask questions, and submit articles. Please forward the blog link to your family and friends. They'll be glad you did.

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Patricia Grace
founder & CEO
Aging with Grace

Thursday, June 25, 2009

I think my (fill in the blank) has Alzheimer’s! What do I do?

Submitted by: Laura Bramly

More and more people are coming forward to say that one of their family members or friends may be showing signs of memory loss. I get this question all the time: What do I do now? Where do I go? Who do I talk to?

There are so many diseases in the world, some easy to diagnose and some more difficult, but everyone knows that the first stop is the doctor. With memory loss, it’s different. For some reason (probably due to the stigma of losing memory) no one knows where to turn or what to do next. Here are three steps that you can take with your loved one who may be showing signs of memory loss: Diagnose. Manage. Live.

One proviso: Alzheimer’s disease is a type of dementia. There are some 70 or more types of dementia, with Alzheimer’s being the most prevalent, along with Vascular Dementia (caused by a stroke) and Lewy Body Dementia. People can have two or more types of dementia at one time. Even when considering Alzheimer’s alone, no two people with Alzheimer’s will present exactly the same symptoms or maintain the same capabilities. Each person is different. So, even though there are three steps to take with a person who may have dementia, the exact path that each person takes will differ.

In talking about the three steps, I alternate between talking about the caregiver and the person with dementia in the third or first person to cover both bases; perhaps “you” are the caregiver who is reading this blog, or perhaps “you” are the person with symptoms of memory loss. I strongly believe and recommend that all steps should be taken in partnership between the caregiver/family member and the person with memory loss.

Step One: Diagnose
Memory loss should be treated like any other illness for which a diagnosis can mean the difference between suffering in silence and receiving a treatment that can have a real impact. Memory loss is not a direct ticket to the nursing home, as it can result from such treatable medical conditions as depression and anxiety disorders, thyroid disease, B12 deficiency, elevated homocysteine levels, dehydration, infection, brain tumor and others.

If possible, see a doctor who is a neurologist, or who specializes in geriatrics (if the person experiencing memory loss is a senior). If you see your primary care physician, make sure that you go to your appointment well-armed with information about diagnosing the cause of memory loss. If the only test your loved one receives is a memory test, ask for further testing. Such conditions as brain tumors can not be diagnosed by a memory test! Most importantly, ensure that you feel comfortable conversing with the doctor, that you don’t feel as if you are getting brushed off, and that you are receiving thoughtful and knowledgeable answers. If you don’t feel this, find another doctor.

Step Two: Manage
If the diagnosis for memory loss is Alzheimer’s disease or another form of dementia, then it’s time to understand how to slow the progression and how the disease may impact the rest of the person’s life. Talk to the doctor about drugs that are available to slow the progression of the disease. Put together a program of exercise, healthy eating, brain activity and socialization. Studies have shown that all of these factors can contribute to slowing the progression of the disease.

It’s also time to understand how the disease may unfold and affect the person with dementia over the years (again, understanding that no two people have the same experience with dementia). For example, the early stage of dementia is a good time to get financial affairs in order and determine what care options are available so that a plan can be implemented “when the time comes.” Now is the time to have thoughtful discussions with family and friends about what the future may bring, so that family members are not forced into making reactive and upsetting decisions about these important issues. It’s also a nice time to put together family history scrapbooks, make videos, reconnect with long lost family and friends.

Step Three: Live!
Dementia is not a death sentence. Well, OK, it can be. We will all die sometime, but people with dementia know more or less when they will die and what it might look like. So, in the years that are left, it’s time to live. Yes, driving will become unworkable at some point. People with early-onset dementia may lose their jobs. Activities that were once easy, requiring no thought, may become more difficult or indeed, impossible. However, that does NOT mean that a person with dementia must resign themselves to a life of watching the TV alone in their house with a caregiver, or to mindless activity in a nursing home. In fact, don’t, just DON’T!

While it’s hard enough for people without a life-threatening disease to find purpose in life, many people with dementia find new purpose in their lives when they know life is limited. It’s time to ask one’s self: How am I going to use these last years of my life so that I can have the greatest impact on my family, my community, my country, my world? People with dementia are in demand as bloggers and speakers, so that they can pass along their experiences and recommendations to a public hungry for more information about dementia. There is no one who can comfort a newly-diagnosed person more than a person who already has the disease and who can pass along reassurance and counsel. A person with dementia might also find new purpose in volunteering for other causes, or in travel, or in taking up a new hobby. Anything one can do to keep the brain and body active is essential to slowing the progression of the disease, even when one reaches the later stages of the disease.

The person with dementia and their family may find that many of their friends stop calling to invite them out; dementia still has a terrible and unfounded stigma that makes even “good” friends reluctant to maintain former relationships. Through your local Alzheimer’s Association support groups or through your faith community or senior’s centre, find other families dealing with the disease and with whom a social group could be formed. Just because a person has dementia doesn’t mean that they don’t enjoy going out for a beer on Friday night!

In later blogs I will endeavour to break down these three steps into more detail. In the meantime, I welcome comments and emails to laura@eldercareread.com

1 comment:

  1. Very interesting article. One concern I have about providing elderly assistnace to aging parents who aren't happy with their doctor and should seek a second opinion. Having recently switched my senior mom from a wonderful HMO to regular Medicare with a good supplement, we discovered not all doctors like to accept new Medicare patients, due to all that Medicare requires. That means that, once you find a doctor who accepts you, many people, especially the elderly, will find it too difficult to try to switch, even if they are not happy with their doctor. A very frustrating situation, that will probably only get worse as Medicare's woes continue to increase.


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