I’ll be presenting and demonstrating the approach I developed to use the iPad with my wife at the CT PC User’s Group of CT meeting in Trumbull on January 26.
Details at http://tpcug-ct.org/
Keeping a person with dementia engaged in activities can be very challenging. Ed Fitzgerald, a technology consultant whose wife is living with Frontotemporal Degeneration, looked for ways to use technology to help her.
After some trial and error, he developed an approach to using the iPad, by creating a home screen of activities they do when they are together, combining apps, links, games, videos, pictures and more.
During this seminar, Ed will talk about how he got started on this project, demonstrate how they use the iPad, the process by which he created a customized set of activities and offer advice on how to proceed if someone is interested in pursuing it with their loved one.
He has also explored the use of augmented reality, virtual reality and a combination of real play and virtual play.
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!
Go to www.ftdtalk.org/glossary/
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
We ended the year with a 66% increase in the number of views and a 34% increase in the number of visitors compared to 2015.
Since the beginning, there have been 3,341 visitors and 4,828 views.
As I said the last time I posted the stats, I feel good that we are here for people in need, but wish we didn’t have to be. It would be nice someday to do a final post because we aren’t needed any longer.
From the Partners in FTD Care Newsletter:
Dan is a middle-aged man from Ohio who has FTD. His symptoms have frustrated the efforts of his wife, Rita, to engage Dan in necessary self-care activities. Fortunately, occupational therapists are trained to overcome exactly these types of challenging behaviors.
This issue of Partners in FTD Care explains how Rita worked with a home-based OT — and, later, therapeutic recreation specialists — to develop an individualized plan based on Dan’s own unique behavioral patterns, needs and interests. This tailored approach has helped Dan to remain an active participant in his own life.
“The holidays can be a time of renewal – renewal of friendships through visits and cards, renewal of family relationships through gatherings and shared meals, and renewal of one’s faith. But the holidays also are a time that can be particularly challenging for a caregiver. It is a time during which the changes in one’s life are highlighted and there are additional demands placed upon on an already stressed life.” Read more …
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.”
Meet others affected by FTD for an informal gathering of local families, friends, caregivers, community professionals and persons diagnosed with FTD on Saturday, 12/10. See the invitation for the details, who to contact with questions and to RSVP, space is limited.
Travel Tips from the Alzheimer’s Association
Travelling with someone with dementia requires planning to ensure safety, comfort and enjoyment for everyone.
Whether taking a short trip to see friends and family or traveling a far distance for vacation, it’s important to consider needs, abilities and preferences.
Here is a list of tips from the Alzheimer’s Association.
Three things I think are important to consider and be aware of:
When I traveled by plane with my wife, I made sure to check with a TSA supervisor before going through a checkpoint, telling them my wife had dementia and asking which line would be best to get on. I always found them to be very helpful. In one case a supervisor at JFK walked us to and assisted my wife through the checkpoint. As she did she told me she and her sister took care of their Aunt who had Alzhemier’s, so she understood.
Check out their tips for travelers with medical conditions web page, and call the TSA Cares support line number on that page, I did and found them to be understanding and helpful.
Get a MedicAlert Safe Return bracelet for both you and the person you are caring for. Once you sign up and provide the medical and contact information, emergency responders can call a 24/7 hotline number to access that information. I got one for myself because if something happened to me, there was no way my wife could communicate in any useful way.
“My companion has FTD” cards
If your loved on begins to behave in a strange or non compliant way toward anyone, you can hand them the card. I was just told a story of someone travelling with her husband, he would not comply with the the flight attendant’s instructions. Worried the situation could get out of hand she handed the attendant the card and that helped to calm things down. A side benefit was the attendant showed her understanding and empathy by later bringing over a free drink. 🙂
Here is a link to the AFTD site where you can download a PDF and print out your own cards.
This can be an especially tough time of the year when caring for someone with dementia.
Thinking ahead and reading through the tips below may help.
So much depends on the stage of the disease and how the family, friends are reacting to it.
Now that my wife is in the advanced stage and having been through a few holiday seasons, it’s become somewhat easier to plan, but each year is different as the disease and other circumstances evolve.
For Thanksgiving, I’ll celebrate with her at the assisted living facility. They have a special luncheon that day. Then possibly take her to a family celebration, but I’m thinking about the chaos, the kids running around, the activity and how she will react to it. Fortunately, my oldest son has a spacious house, there are places to go to get some quiet time if needed. Plus he is only a 45 min drive from the assisted living facility.
Here are some tips from the Alzheimer’s Association – Holidays and Alzheimer’s Families
To quote from the Alzheimer’s article, “Take a deep breath. With some planning and adjusted expectations, your celebrations can still be happy, memorable occasions.” I wish that for you.