Emergency Planning for FTD Caregivers

Along with the day-to-day caring responsibilities. finding the time to plan and be prepared to deal with a severe snow or ice storm, hurricane, tornado, flooding, power outage, fire, etc. is important.

This came to mind as I’m watching the weather report about us getting hit with a Nor-easter this evening.

I also think about it because I’m a member of Westport’s Community Emergency Response Team, community volunteers supporting emergency services, and in the past we have helped run shelters for residents who had to leave their homes.

r-uHere is a link to Are You Ready, prepared by the Westport Weston Health District. While some of it is specific to those towns, contact numbers for example, most is general preparedness information pertinent to anyone and it is nicely laid out and easily readable.

Another place for info is this link to an article on the National Caregivers Library site about things to consider.

Also a link to www.ready.gov, a Homeland Security web site.

 

“Using the iPad with a Person Living with Dementia”

I’ll be presenting and demonstrating the approach I developed to use the iPad with my ipad-diane-arden-aug2015-03wife at the CT PC User’s Group of CT meeting in Trumbull on January 26.

Details at http://tpcug-ct.org/

Description:

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.

A glossary of FTD and Alzheimer’s related neurological terms

ftd-talkWouldn’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/

Caregiver Support from the CT Chapter of the Alzheimer’s Association

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.

alz-careThey 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.

They have:

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

 

Year End 2016 FTD Blog Statistics

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.

yearend-2016

Think Like an Occupational Therapist: The Importance of Individualized Activities in FTD Care

From the Partners in FTD Care Newsletter:

part-careDan 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.

Strategies for the Holidays from Caregiver.com

“The holidays can be a time of renewal – renewal of friendships through visits and cards, cgrenewal 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 …