Tag Archives: Alzheimer’s

Alzheimer’s Walk

Saturday was a great day for a walk–cool in the morning, warm later on. Team Katten & Benson joined several hundred others as we walked to end Alzheimer’s disease. We had a great time, dogs included! I hope that everyone will consider joining us next year, because I’m sure we’ll have another team.

 

Alzheimer’s Association Town Hall Meeting

I wanted to report on a few things that I heard at last night’s town hall meeting. This meeting provided an opportunity for people affected by Alzheimer’s disease to make statements that will influence the National Alzheimer’s Project Act, or NAPA. This act was signed into law last January, and creates a coordinated national plan to address Alzheimer’s research, clinical care, institutional-, home- and community-based programs and outcomes.

Here are a few of the things that struck me:

  • There were lots of people in their 40s and 50s who have been diagnosed with early Alzheimer’s, as well as their family members.
  • This group with an early diagnosis spoke very movingly about their struggle just to get diagnosed.
  • This group also expressed a lot of dissatisfaction with doctors in general for the lack of information and support provided.
  • There were many caregivers present, and they all talked about the burden of being caregivers.
  • I had heard this statistic before, but it still knocks me over–40% of caregivers will die before the carereceiver, a direct result of the burden of caregiving
These are just a few of the HUGE policy issues related to Alzheimer’s disease that will have to be addressed. A full 50% of people age 85 and older will have dementia, and this age group is the fastest growing age group in the United States right now.
If you want to share your experience with this disease, or offer ideas that could affect policy, you can share input through the Alzheimer’s Association.

How You Can Help Shape Alzheimer’s Policy

If you’re like me, most of the time you think there’s little you can do to help change things. But if you know someone with Alzheimer’s, now is your chance to have a voice in shaping future policy.

The Alzheimer’s Association is sponsoring a Town Hall Meeting on August 31. This is your chance to share how this disease impacts you and your family, and share your ideas about how the federal government can help those dealing with the disease. Representative Kay Granger will be there, along with a representative of the Alzheimer’s Association from Washington, DC, and there might also be someone there from the Department of Health and Human Services. I plan to go, and I hope you will, too.

Alzheimer’s Association Town Hall Meeting

Wednesday, August 31, 2011

5:30 pm to 7:000 pm

UNT Health Science Center

Medical Education & Training Building

1000 Montgomery Street

Fort Worth, TX 76107

For more information and directions visit

www.alz.org/northcentraltexas

Seating is limited, so please RSVP by August 26

817-336-4949 or 1-800-272-3900

News on the Alzheimer’s Front

The New York Times reported today that new guidelines will allow for earlier definition of Alzheimer’s disease. Research is increasingly indicating that changes occur in the brain well before it progresses to full blown dementia. The new guidelines divide Alzheimer’s into three stages: A phase when dementia has developed; a middle phase when mild problems are evident but the person is still functional; and the third, new phase, where there are no evident symptoms but the brain is changing.

The article also reports that a bill has been introduced in Congress that would create specific Medicare cost codes for Alzheimer’s, which would allow for payment for discussions between doctors and caregivers.

One interesting note from the article is that sometimes the earliest symptoms of Alzheimer’s disease s not memory loss, but mood changes or problems with language, spatial perception or reasoning.

There is increasing research being done on early diagnosis, with brain scans and testing cerebral spinal fluid for particular biomarkers. All of this is leading to new research on treatment. Even though there is still no effective treatment, it is important to be diagnosed and address the disease head on by doing proper planning.

 

Kim

Sparkly Card Syndrome

In many families, it seems that no matter how many children there are, more often than not the caregiving for an aging parent falls to one sibling.  This can be for a variety of reasons – geography, financial limitations, family disagreements – but caregiving places a lot of stress on the giver.  And on top of it all, the caregiver may fall victim to Sparkly Card Syndrome.

Ann had six children, and Rosie, her youngest, was her primary caregiver at the end of her life, as she was declining rapidly due to dementia.  (Ann liked to remind Rosie that “One can take care of six, but six can’t take care of one,” which was less than helpful.)  Rosie suffered from the usual symptoms of round the clock caregiving: sleep deprivation, anxiety, depression, and physical and mental exhaustion.  Rosie’s out of state siblings would send Ann cards – pretty, sparkly cards – which she thought were just wonderful!  She loved getting sparkly cards in the mail, and would tell Rosie how wonderful her children were to send her these beautiful cards – which just deepened the feelings of frustration and isolation Rosie felt about being “stuck” as the primary caregiver.  Ann could not realize the extent of or thank Rosie for her help.  Rosie is a victim of Sparkly Card Syndrome.  How do you deal with siblings who are not able to participate in daily caregiving, and despite their best intentions, may make the situation worse?

First, share your feelings of frustration.  If your siblings are not receptive to your situation, find a caregivers support group.  Your local Alzheimer’s Association chapter (find a chapter here, Tarrant County support groups here) offers support groups in a variety of locations, settings and times, and some provide caregivers so you can attend a meeting.  It can be helpful to have someone who is in the same situation to talk to.  You may learn valuable tips from your fellow caregivers.

If your siblings are receptive, try to share the good times with them as well as the bad.  Share when Mom says something funny or has a good day, and they may be more willing to listen when you need a shoulder to cry on.  Your siblings may be feeling cut off.

Second, ask what they can contribute.  If your sibling is out of town, ask if they can visit for a weekend to stay with Dad while you take a day off to run errands or get out of town to rest.  Ask for a monetary contribution – whatever is affordable for that person – to help pay for daily sitters, respite care, or other items that an aging parent may need.

Have a heart-to-heart with your siblings about their involvement.  If a brother is simply not able to participate in any way, ask for his blessing to make whatever decisions need to be made without expecting criticism from him.  If you have a sister who would be more than happy to help, but lives too far away, promise that you will keep her updated with a short email or phone call, and ask for her input in decision making.  Defining the roles of each person in the family can go a long way towards preventing strife.

Finally, don’t be afraid to take care of yourself.  Your feelings are important too, and if a caregiver support group isn’t enough, seek out professional counseling.  You are certainly not the first one who feels overwhelmed and frustrated.  If it gets to be too much, visit with an attorney or geriatric care manager to see what options are available.

Rosie is my grandmother, and Ann was my great-grandmother. Times have changed since Rosie was a caregiver, and this story is not meant to demean any of her siblings, just illustrate how frustrating caregiving can be.  Be sure to take advantage of all resources available to help you through a difficult time – including your Sparkly Card siblings.

-Monica

Art and Alzheimer’s

Good morning – I hope everyone had a great weekend. I’m over at an office by the Amon Carter Museum this morning, and it reminded me of a great program they offer. The museum offers occasional guided visits for Alzheimer’s patients and their caregivers designed especially for those with memory impairment. Rather than cover lots of ground, these visits concentrate on just a few pieces of art and discussion. You can learn more about this great program with the link below.

Happy Monday!

Sharing the Past Through Art – cartermuseum.org

-Monica