Aug 27, 2015

A person centered way to track dementia stages and symptoms for caregivers?

Look at the density of homes in this neighborhood.

By Mara Botonis
Alzheimer's Reading Room

Imagine the families that live in each of these homes. Their ages, occupations, interests, spiritual beliefs, favorite movies, music and foods.

The way they like to spend a rainy Saturday, their favorite pair of jeans, the memory of their first date or what's in their refrigerator right now or what channel the television is currently tuned to, are all likely very different.


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The unique experiences and preferences that make them individuals didn’t go away because they chose to live in the same neighborhood. But what if we had the authority to change that? What if we offered them only 7 choices in order to make it easier for us to categorize or describe them in an effort to help understand them better?

What if they could only choose to like one of only 7 types of music? Eat only one of 7 types of foods? Wear only one of seven types of clothing? Or be relegated to a collection of a cluster of only 7 types of experiences?

Would these be enough to be of value? Would they help honor the individual or support the more convenient grouping of the collective, or both?

Each person’s experience with Alzheimer’s or Dementia is unique, it's unique to them. We all know this, most of us live with this knowledge professionally or personally daily.

Symptoms may change frequently and progress differently with each person afflicted with dementia, and can be affected by many factors.

With this new wave of person-centered thinking, it often feels like our diagnostic tools and ways of collecting information could benefit from being more intuitive when it comes to each individual.

The Alzheimer's and Dementia Person Centered Symptom Tracker tool was created and then refined based upon feedback during the course of writing and researching my book to answer the following needs from the medical community, persons living with dementia and their care partners.

The feedback I received showed widespread frustration with the idea that loved ones moved in and out of stages of dementia frequently-sometimes with in the very same day.

A growing number of person-centered professionals were starting to resist the idea that just because a group of persons lived in the same "neighborhood" of dementia, they were homogeneous. The reasons?  Progression, symptoms and care options had more than just 7 categories.

I worked with a variety of lay and medical persons, newly diagnosed individuals, care partners, advocates and Alzheimer's experts for more than three years to develop this version of The Alzheimer's and Dementia Person Centered Symptom Tracker Tool .

When Caring Takes Courage: A Compassionate, Interactive Guide for Alzheimer's and Dementia Caregivers

Here was some of the feedback that formed its creation:

Medical Community team members reported:
  • Someone is doing "worse" or "isn’t getting any better", isn’t specific or measurable enough to be actionable from a medical standpoint.
  • There is not enough time during office visits to extract the most pertinent information from caregivers and persons living with dementia about the changes in their range of symptoms
  • Often caregivers or PLWD expect titrating meds to a routine part of each visit and that is not always the best way to slow progression or rule out reversible reasons for an exacerbation of symptoms (UIT, Dehydration, medication contraindication, malnutrition etc.)
Persons Living with Dementia/Care Partners shared:
  • I feel our appointment are so rushed, I can barely get through my list of questions for the doctor/nurse.
  • I don’t have time to do a lot of paperwork-this checklist would be helpful if it was only a one page tool.
  • I don’t feel comfortable talking with the doctor and nurse's about what my loved one has been doing/experiencing in front of him/her.
  • I don't always feel like my doctor is listening when I tell him/her my loved one is getting worse.
This FREE tool was designed to help the family caregiver track the type and frequency of the symptoms their loved ones are exhibiting and is updated every 30 days.

The completed tools are shared with the medical team to support better communication and planning with healthcare providers as both collaborate in identifying the best possible treatment and interventions enhancing their ability to collaborate in much more person-centered Alzheimer's care.

If you'd like to try the Alzheimer's and Dementia Person-Centered Symptom Tracker, get your FREE copy here:

https://docs.google.com/document/d/136L3nDaB9uup4LwrYcZ39EH-6mi4Uqjm-OwQ5GN4sN8/edit?usp=sharing

PS: One wonderfully unexpected benefit came from families who reported other uses for the Alzheimer's and Dementia Person-Centered Symptom Tracker,:
  1. "It helps me focus on the abilities my loved one has remaining intact."
  2. A wife of an 89 year old person living with dementia shared that, "I compare this tool month over month like our report card and I look at the changes."
  3. I didn’t think we'd have any reason to celebrate but this tool helps shows me some of the things he CAN still do that are holding on a little longer and that is some nice news to have."

Mara Botonis is the author of When Caring Takes Courage. You can learn more about Mara Here.

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