I was invited by the CT Chapter of the Alzheimer’s Association to meet with Rep. Jim Himes along with three other caregivers. The objective of the meeting was to help him understand the challenges of being a caregiver and raise his awareness and get his support for two pending pieces of legislation.
We all had some powerful stories to tell and I think we had some impact on him. He listened patiently and asked some good questions. After breaking, he continued to talk one on one with a couple of us. Two of us were FTD caregivers.
There are two bills in Congress that address the needs of caregivers that he recently signed on for as a cosponsor.
- Recognize, Assist, Include, Support, and Engage Family Caregivers Act of 2015 or the RAISE Family Caregivers Act – H.R. 3099
This bill directs the Department of Health and Human Services (HHS) to develop, maintain, and periodically update a National Family Caregiving Strategy. HHS shall convene a Family Caregiving Advisory Council to advise it on recognizing and supporting family caregivers. Read more.
- PCHETA: Palliative Care and Hospice Training Act – H.R. 3119
This bill amends the Public Health Service Act to require the Department of Health and Human Services (HHS) to award grants or contracts for Palliative Care and Hospice Education Centers. These Centers must improve the training of health professionals in palliative care and establish traineeships for individuals preparing for advanced education nursing degrees, social work degrees, or advanced degrees in physician assistant studies in palliative care. Read more.
We should all take the opportunity to speak to our representatives when they hold their town hall, community meetings, write to them, and make sure that caregiving is a topic that they hear about and understand.
Registration opens up in mid-February. Caregivers are welcome to attend. There is a fee. Last year it was $60. I’ve attended it more than once and have found it to be very informative.
Great speakers and a variety of vendors displaying their products and services. There has been a session on FTD the times I’ve attended.
For professionals who attend, they can get continuing education credits.
It is held at the Radisson Hotel in Cromwell. Sponsored by the Alzheimer’s Association, CT Chapter. More info.
Wouldn’t it be nice to have a place to go to get a brief description of terms like Aphasia, Acetylcholinesterase inhibitors, Dysphagia, Executive function, Lumbar puncture, Neuroleptic drugs, Tau, and many more terms we hear about.
Well there is.
FTDtalk, run by a group of scientists investigating FTD at the University College London Institute of Neurology in the UK, put together a glossary. Thank you scientists!
The Alzheimer’s Association is a great resource for information and support. The local office of the CT chapter was extremely helpful to me and my wife.
They have a section on their web site that provides information by stages, early-stage caregiving, middle-stage caregiving, or late-stage caregiving, which is very helpful since each stage has its own unique aspects.
An online community: The ALZConnected® online community for everyone affected by dementia, Alzheimer’s or something else, like FTD.
An online tool, Alzheimer’s Navigator®: Designed to help guide you to answers by creating customized action plans and providing access to information, support and local resources.
Check it out at http://www.alz.org/care/overview.asp
I realize it is short notice, but I just became aware of this on the Daily Voice web site.
“The Alzheimer’s Association is sponsoring The Holidays and Dementia talk at Bigelow Center for Senior Activities on Wednesday, Dec 14th at 10:30 a.m.
The focus will be on helping caregivers feel less anxious, frustrated and stressed. With some planning and adjusted expectations, celebrations can be happy, memorable occasions.
The Center is located at 100 Mona Terrace, Fairfield. Any CT resident over 55 is welcome to attend. The program is free of charge. Pre-registration is required by calling 203-256-3166.”
This came up in a support group meeting last week, so I’m reposting information about Medic Alert bracelets that are used to identify an individual with dementia who wanders or if a caregiver has a medical emergency.
The initial reason I got a bracelet for my wife was not her wandering, but what if something happened to me while she was with me. We get into a car accident and I’m unconscious. She wouldn’t have been able to provide any information to emergency responders. So I signed both of us up and we both wear bracelets.
There is information on the Alzheimer’s web site and they can be ordered there, although I recommend calling. I ran into problems with the web site when I tried to add my bracelet to the order.
MEDICALERT® + ALZHEIMER’S ASSOCIATION SAFE RETURN®
“a 24-hour nationwide emergency response service for individuals with Alzheimer’s or a related dementia who wander or have a medical emergency. They provide 24-hour assistance, no matter when or where the person is reported missing”. Go to AlzMedAlert.
On Sunday, October 16, 2016, Esther and Keith Harvey from The Connecticut Frontotemporal Dementia Foundation, Inc. educated people about FTD during the “Walk to End Alzheimer’s” in the Greater Hartford, CT area. An awareness table was offered with information on FTD, AFTD and The Connecticut Frontotemporal Dementia Foundation, Inc. Thank you, Esther and Keith, for spreading much needed FTD awareness!
I just heard about this group. It’s great to see young people getting involved!
The Alzheimer’s Youth Alliance (AYA), a group of about 20 high school students from across Fairfield County, raises awareness and funds for the Alzheimer’s Association.
Founded by Ava Vanech, a freshman at Sacred Heart University, to honor her grandfather who had Alzheimer’s disease. Although she never got to meet him, she sees the impact this disease has on her family.
This inspired her to spearhead the founding of the group. In 2015 the group organized a walk team to raise over $16,000!
They will be at the Alzheimer’s Walk on September 18th at Calf Pasture Beach in Norwalk.
Go to the Team page of ALZHEIMER’S YOUTH ALLIANCE to support them.
Held annually in more than 600 communities nationwide, the Alzheimer’s Association Walk to End Alzheimer’s® is the world’s largest event to raise awareness and funds for Alzheimer’s care, support and research. This inspiring event calls on participants of all ages and abilities to reclaim the future for millions!
The local walk is at Calf Pasture Beach in Norwalk on Sunday, September 18, 2016. Click here for details.
I’m walking with TEAM MCKEE, click here to sign up.