The Dementia Caregiver's Toolbox

Dementia Stories Get Recorded with StoryCorps Memory Loss Initiative

A non-profit organization called, StoryCorps Memory Loss Initiative has recorded over 2,000 individual conversations and stories of those living with Alzheimer’s disease since they formed in 2006.  Their 40-minute, audio-recorded interviews are a simple way for caregivers to receive a recording they'll treasure forever.

As a way to get the word out to caregivers, StoryCorps is offering a free four-part Toolkit that gives caregivers everything they need to begin their own recording interviews.  For the free toolkit, go to: storycorps.org/mli

There are also digital tools and sample audio segments available on the website too.

If you have any questions about how to use the tool kit for recording your loved one’s story, please contact StoryCorps at memoryloss@storycorps.org or by calling 646-723-7027.

If you’ve used the services and already done a recording, please share your experience with our readers!!

 

Dementia Caregivers Tour The Virtual Home

A new multimedia project from Weill Cornell Medical College called, "thiscaringhome.org" is a winner for providing dementia caregivers easy to understand methods of safeguarding almost every area of their home.

Developed by Rosemary Bakker, MS, ASID, an interior designer with a background in gerontology, thiscaringhome.org is an interactive website that allows dementia caregivers to get real tips about the 4 key areas of the home:  the bedroom, the kitchen, the living room and the bathroom.  Once a participant clicks on an area such as the bathroom, the site highlights many other detailed areas within the bathroom such as the towel rack, bathtub, lighting, etc.  There is written narration as well as some audio feedback that describes some key suggestions for safety.

This site represents some of the best practices in home safety and dementia care so be sure to check it out.

Give us your feedback after you visit and spread the word!

Understanding Huntington Disease Dementia

I received an email from Julie Martini, a volunteer who works with clients with Huntington Disease (HD) in Canada. She had the following information about Huntington Disease that I thought you would find of interest:

Huntington Disease (HD) care is not only about dementia, but also includes:

• serious emotial and behavioural changes ranging from temper to inappropriate sexual behaviour and patient's unawareness of disease.  These evolve over time, so just when you think you have something figured out...
• enormous nutritional requirements (as high as 8,000 calories per day) due to constant uncontrolled movement combined with sufferer's diminished ability to control swallowing and plan meals to meet their own needs
• choking, succeptibility to aspirational pnenomia, etc.
• caregiver isolation as a result of familial secrecy due to 50% heredity and huge potential for genetic discrimination
• guilt or denial in those family members who have tested negative or who have not undergone genetic testing, leaving a smaller number of family members to help out
• onset in 30's or 40's in a world focused on disability and dementia only in seniors (also a rare, accelerated juvenille version with onset as early as 2.)  Reverse age discrimination resulting in placement denial.  Or placement where the patient is the youngest by 20 years, leading to decreased quality of life.
• frequent misdiagnosis or late diagnosis resulting in firing rather than disability insurance, adding financial worry
• protecting from physical harm as a result of uncontrolled, jerky movements which result in bumps, bangs and falls
• constant advocacy and/or explanation of HD which is not well known even by doctors and caregivers, let alone neighbours or potential donors.  It is not unusual that every care facility a patient enters, they are the first HD patient.  Treating it "just like Alzheimers" just doesn't work, but often facility staff don't listen until the initial placement has gone poorly.
• multi-generational, multi-stage illnesses in same family.  A patient or caregiver is often faced with late stage HD in the older generations and early/mid-stage HD in siblings or cousins.  Where adoption or misdiagnosis of older generations has occurred, unsuspecting couples have their families before knowing that they themselves are at risk, resulting in another generation growing up under the cloud of a 50% risk of inheriting.
• incredibly high patient suicide rate due to lack of treatment or cure, witnessing other family members experiences, long, slow progression of disease.
• There is also:
  • a wonderful community of dedicated volunteers and families supporting each other
  • a novel framework for how research is being conducted and information being shared--nothing short of beautiful
  • amazing research which is aided by a single on/off gene, accurate animal models, etc.  It is expected to contribute significantly to the knowledge base for Alzheimers, MS, stroke (brain repair), cancer (cell growth vs. cell death), etc.
   

Here are some links you may find interesting of useful:

 

http://www.huntingtonsociety.ca/english/index.asp  (particularly Publications and )

http://curehd.wordpress.com/ (our chapter blog)

http://curehd.wordpress.com/2009/09/20/world-congress-on-hd-documents-online/ abstracts from the World Congress on Huntington Disease this past September including a section on care.

Julie, thank you so much for a great summary of information on this disease.  Please visit Julie's blog for more info.

 

Dementia: New Website With Articles Available

After receiving lots of mail and questions over the years, I took the plunge and created a second website:  www.dementiatoolbox.com, that will focus primarily on dementia care.  My reason for making this site was to be able to refer people who have general questions and need quick basic info on dementia.  My other website, www.nurturingnuggets.com, focuses on so many areas that I wanted one site just for dementia care.  And of course, doesn't the web address of the new site sound familiar?  Just trying to keep things tied together.

As you can see when you visit the www.dementiatoolbox.com site, many articles are in place but others still to come.  I based the topics on the questions that I read about and hear about most often. 

I'd be happy to know of any suggestions you have for additional topics for the new website or this companion blog.  I am still working the bugs out but look to you, the readers, to help me with this "work in progress".  Any and other comments are welcomed.........

Dementia Down Under - Dementia Resources From Queensland

We are all finding answers together to the dementia caregiving challenges.  I received a recent email from a colleague in Queensland Australia about the Dementia Behavior Management Advisory Service (DBMAS) that they have created to help dementia caregivers.  Here is what she had to say.....

Dementia Caregiving Community Gets New Online Resource

A new online community, called "ConnectingForCare.com", was announced recently with a goal of connecting and assisting the over 50 million caregivers in the United States.

Dementia Caregivers Top Ten Blogs

Exciting news!! 

Carespace Blog has just named their list of "Alzheimer's and Dementia Blogs:  Ten We Found Useful" and The Dementia Caregiver's Toolbox has made the list! All of their top ten are great resources so be sure to check each one out.

Check out the full article here.

Alzheimer's Disease Education & Referral Center

I want to be sure you start the New Year knowing about an important website resource for Alzheimer's Disease and dementia information:  ADEAR, also know as The Alzheimer's Disease Education & Referral Center. 

Dementia Caregiver's Toolbox Wins Health Central Award!

While I was teaching in Texas last week, I received the exciting news that this blog, "The Dementia Caregiver's Toolbox, just was awarded one of Health Centrals best internet sites of 2007.  What a way to get my attention!

Judged by an expert team from Health Central, which hosts the popular site "Our Alzheimer's", five ...

Dementia Caregiving Stress Lessened With New Websites

New websites that relate to caregiving keep popping up all over.

Two new ones that you might check out are: ShirleyBoard.com and Silvercensus.com.

Developed by Mark Willaman to help with the organization of his mom's paperwork, ShirleyBoard offers a free place to store caregiving information and also have a way to manage the info so others can access it in an emergency. One of the often repeated suggestions to overburdened caregivers is to keep key information handy.