The Dementia Caregiver's Toolbox

Dementia Infections May Cause Disease Progression

A recent study published in the journal, Neurology,suggests that infections pose a new concern for persons with  Alzheimer's disease. 

The study was conducted by a group of scientists from a number of academic settings in the UK.  In conducting cognitive testing and blood sampling on 300 community members who had mild to severe Alzheimer's disease, they discovered that those subjects who had "systemic inflammatory events" (mild or moderate infections) showed a greater increase in cognitive decline that those who did not have infections.

According to their findings, inflammations of the body produce a particular factor which appears to be associated with more cognitive loss.  This has a great impact on dementia caregivers who try so hard to keep their loved ones infection-free.  Obviously, any vaccinations that are recommended should be done quickly and dementia caregivers should seek early treatment for their family member when symptoms develop.

Has anyone noticed any "non-scientific" trends in their own situations--where a person with dementia seems to have a greater cognitive decline following an infection?  Please share with us.

Professional Dementia Caregivers Need Help Too!

In addition to getting responses and comments on the blog, I get a few private emails per week from folks just like you who are looking for answers.  Usually, the email format allows for more personal and private information to be exchanged.

I received an email this week that was cute and seemed to be a general request for information that was probably sent out to many people.  I wanted to share it with you but I did remove the location and name of the party to protect their privacy.  Here it is......

Hello, I am a nurse in a memory care community. I have a wonderful care staff that provides excellent care for our 40 Alzheimer's residents. I am so thankful for all of them. I am looking for ideas and ways to express this in a meaningful and unique way to each of them, and ways to reward their efforts. Can you help me? Thanks so much for your time and consideration. Happy Thanksgiving!

I loved the joyful tone of this email as the writer is a professional caregiver who is obviously in the right job!  Here is my answer to the writer:  The best gift you can ever give a person with dementia is to know them as an individual, all their likes, dislikes, passions, hobbies, friends, quirks, schedules, everything about them.  And with all that personal information, use it to trigger all the wonderful parts about them and then just love them, that's all.  Make them comfortable with wonderful activities to stimulate them and things around them to make them feel connected.

So what would you tell the writer to do?  Let's get some sharing going out there!

Comfort Zone Technology Launched By Alzheimer's Association

As a member of two committees at my local Alzheimer's Association chapter, I was so pleased to hear about the collaboration between the Alzheimer's Association and Omnilink to launch a special product called Comfort Zone.  This unique product is something that dementia caregivers everywhere have been waiting for.

Dementia Care: Designing A Better Bathroom

If our goal is to keep a person with dementia as independent as possible, it would make sense to design or alter the bathroom area so it is as easy to use as possible.  

Here are a few things to consider in making a bathroom dementia-friendly:

1. Use a wide entry door and proper door swing so the person can navigate safely
2. Install grab bars that are angled away from the wall which seem to be more useful than the standard horizontal bar since some residents may not have good upper body strength
3. Give consideration to toilet height.  Sometimes a seat riser or thicker toilet seat may help the person reach their destination
4. Think about adding color contrast.  Since bathrooms can be white or monochromatic, it is important to create contrast between the floor and the toilet or the sinktop and the floor.  Again, this contrast helps the person with dementia locate the all important sink or toilet.
5. Use mirrors with caution as mirrors may help those in the early stages of dementia if installed low enough but could confuse someone in the later stages of dementia.  The possible confusion for a person in the middle stages of dementia might be seeing their own reflection and not recognizing themselves; instead seeing a stranger.

These changes can be tricky in the home environment but even changing one or two things might make all the difference to your person with dementia.

What have you tried in your bathroom environment that has worked?  Please share!

 

Advanced Dementia Labeled Terminal Illness

A new study published in the New England Journal of Medicine identifies advanced or end stage dementia as a terminal illness.  Hard for dementia caregivers to believe, but up to this point advanced dementia was not thought of as a true terminal disease.

Dementia Caregivers - Meet the Pioneer Network

There is a group working behind the scenes (and in front too) helping advocate for all those aging, including those with dementia.  You may have never heard about them, but you need to know about them.  The group is called The Pioneer Network.

This wonderful advocacy group started in 1997 and took official form in 2000 with volunteer groups working together on the mission of "...advocate and facilitate a deep system of changes and transformation on our culture of aging".

Dementia - Repetitive Questions: A New Product To Help?

We've discussed before the intense challenge of having a person with dementia asking certain questions over and over.  I received an email about a new product that may help with the situation. 

After talking over the care of her 92 year old mother, Jeannette Twoney, faced the multiple question situation just like we all have.  The difference here is that Jeannette appears to have tried a new approach.  Jeannette, a mediator by trade (interesting caregiver training!), invented Kind Reminder, a small recorder that the person with dementia can wear around their neck.  When a simple button is pressed, the person can hear the voice of a family member or friend reassuring them.

Dementia: What Does "Home-Like" Really Mean?

We all hear the buzz words "homey", "home-like", and "just like home" to describe the perfect dementia environment.  Yet what does this exactly mean?

A person with dementia could actually be living in their home (a good thing) yet not really be surrounded by a "home-like" environment.  How is that possible?

A home is not just the bricks and mortar; the physical environment.  It is so much more:  the physical plus the social and emotional parts of the place that make it home.

So a person with dementia in their own home might not be in a "home-like" environment because the home they are mentally tuned into doesn't look like their home of today.  Our job is to reconfigure the space to make it "homey" for them.

I saw this great description of what a home is, in The Daily Om that I edited to share with you.  The title of the whole article was "Wherever You Are".  Here is the excerpt:

The word "home" has a wide variety of connotations. To some, home is merely a place where basic needs are addressed. To others, home is the foundation from which they draw their strength and tranquility. Still, others view home as a place inexorably linked to family. Yet all these definitions of home imply somewhere we can be ourselves and are totally accepted. There, we feel safe enough to let down our guard, peaceful enough to really relax, and loved enough to want to return day after day. However, these qualities need not be linked to a single space or any space at all. Home is where the heart is and can be the locale you live in, a community you once lived in, or the country where you plan to live someday. Or home can be a feeling you carry inside yourself, wherever you are.


Your home can be any space or state of being that fulfills you, provided you are at peace with yourself and your surroundings. A person can feel like home to you, as can seasons and activities. Simply put, you will know you have found your home when both your physical environment and energetic surroundings are in harmony with the individual you are within.

 

How do you create the "home-like" environment that rings true for your person with dementia?  Share your secrets!!!

Dementia Caregiver's Need Meditation

A new research study reports that dementia caregivers can reduce stress by adding simple meditation to their daily routine.

The Alzheimer's Research and Prevention Foundation in collaboration with UCLA's Psychiatric Department prepared a study that tested the theory that meditation can be used to successfully reduce "stress response and improve cognitive function in older dementia caregivers".  The study was headed by researcher Dr. Helen Lavretsky of UCLA.

I know you are saying to yourself:  meditation?  I don't even have time to do other things!  Meditation is defined by MedTimes as, "a self-directed practice for relaxing the boy and the mind".  It obviously has been shown to have benefits but how to you do it?

There are many websites, books, CD's, etc out there to help you get started but the basics are:

1. Find a few minutes in your busy day that will have no interruptions, start with 5 minutes
2. Sit comfortably in a chair or on the floor.  Sitting is better than laying to avoid sleep. 
3. The tough part:  focus on clearing and quieting the mind.  

It's tough because our minds constantly bring in new thoughts. Some people try to focus on one word or one view in their mind to help them clear the unwanted intrusive thoughts.  The thoughts will come but you have to acknowledge them and push them away.  Your grocery list can wait; this time is for you to recharge.   

One thing I've heard is to not give up, keep at it and eventually you will see benefits.  Obviously someone thought dementia caregiver's need stress release (we could have told them that!) so why not try it?

Let us know how you do!

Dementia Video Scrapbooking

We've talked before about using meaningful pictures or sounds to bring quality to the life of someone with dementia.  As our assess to simple technology continues to grow, we now have the ability to make special video scrapbooks that are a portable way to connect with sight/sound and great memories.

A video scrapbook is simply a video collection of anything you can imagine:  old photos, family vacations, prints, slides, negatives; anything that will spark the interest of the person with dementia that you are making this for.  All these images are collected together in a sequential order or randomly and can be narrated by a familiar voice or set to meaningful music; either choice is meant to add to the enjoyment, not overpower the images.  To keep it interesting, you can add zoom ins and zoom outs and special features that make transitions fun.  All of this is burned together on a DVD.

The benefits of making a video scrapbook are many.  First, its very portable--you can take a copy in your purse or pocket and pop it in to watch almost anywhere these days.  Secondly, it is so personal that it will have the most chance of holding your special person's interest and bringing them a much needed connection.  Another benefit is that it is easy to do.  An online search shows many companies happy to assist you with the process or guide you through it on your own.

I know video scrapbooking works; I've seen it.  Even having a beloved family member's voice narrating a series of pictures can be very soothing to someone with dementia.  How have you used this technology in the dementia caregiving process?  Give us your thoughts on how this has worked for you.