Dementia Care@AAIC 2013: Taking it to the street

Please find below my notes from the Dementia Care@Alzheimer Association International Conference, which happened Wednesday, July 17, 2013 at the Boston Convention Center, Boston, MA. These notes are compiled for unpaid family caregivers and professional care staff who may not have the time or money to attend such a conference. The notes represent highlights from my personal experience and are not intended to be a digest of information presented at the conference.

Pre-Conference Conversations
“Raymond” song by Brett Eldredge – recommended as a good song for dementia care support, education, and awareness.
Non-verbal communication tools – using graphic images/symbols – are available for adults with dementia. Check out: Say it With Symbols!

Opening Session: Research Update
A. Pharmacological Treatments: What’s New? Ron Peterson, MD PhD, from Mayo Alzheimer’s Disease Research Center, provided a summary from the research conference.
The reality: 2013 Alzheimer’s Disease Facts & Figures Report; 1 in 3 seniors dies with dementia; no breakthrough cures or treatments yet.
The future may include:
– people-considered-at-risk taking preventive medications before dementia symptoms are present.
– prescriptions may include a cocktail mix to slow or reverse Alzheimer’s/Dementia (AD) similar to HIV treatment approach.
– people with type 2 Diabetes are at a higher risk for developing AD
– research participants are needed – go to: to see what’s available in your area
B. Non-Pharmacological Treatments Katie Maslow, M.A. from Institute of Medicine, National Academy of Sciences provided the state of the arts.
We need a better definition – better than “not drugs.” Perhaps begin with the goal – what is the goal? To maintain the highest level of a. functioning b. well-being c. engagement d. quality of life?
Translating Innovation to Impact 2012 Whitepaper Alliance for Aging Research provides overview of evidence-based interventions to support people with dementia and their care partners at home and in the community.
Gaps in Research & Practice: racial & ethnic groups, early & late stage dementia, nonAlz dementias, dyads
A language system needs to be developed:
– What are the characteristics of the people intended to be helped?
– Which problems do interventions intend to solve?
– What type of treatments and care practices do interventions provide?
– How, where, & by whom are interventions delivered?

Non-Pharm Treatments and Programs
A. Psychosocial Research to Help Caregivers & People with Dementia Mary Mittelman Dr Ph, NYU Comprehensive Center on Brain Aging
NYU Caregiver Intervention
In summary: Dementia caregivers benefit from a program that combines individual counseling, family counseling, and ongoing individual and family counseling as needed. This approach was an innovation on past interventions because the family was involved, which helped to improve understanding and communications between family members. When understanding and communications improve in the family, the caregiver feels greater support and less burden (this benefits the person with dementia too). Yay! The future will include finding ways of funding this type of intervention so that all families can have access and benefit.

B. Driving and Dementia Nina Silverstein PhD UMass Boston
In summary: This is a topic of great concern and not something to ignore if you are concerned about yourself, a family member or friend who has or may have dementia.
Driver Rehab Specialist
Get an evaluation! Find a driver rehab specialist in your area!
Helpful Publications
Hartford Insurance publications include: “We Need to Talk” and “Driving with Dementia”

C. ARTZ: Artists for Alzheimer’s John Zeisel PhD Hearthstone, “I’m Still Here”, “Inquiry by Design”
Community partner, research partner, and cultural partner can work together to create an ARTZ Hub (i.e. Gardens, Movies, Zoo, Market, Museum, Symphony) to promote living fully through end-of-life.

Keynote Steven Sabat PhD Georgetown University
In summary: A person with dementia is a person NOT a patient. See the person, not the disability/disease. “I am not my diagnosis!” A person with dementia still has their strengths and will lead their reactions/responses/behaviors from their cultural, personality and professional roots.
Question: Best way to coach family members?
Answer: Help caregivers address/express their grief & anger, reflect on their hurt; then, work together as a team.

Creative Arts and the Environment
Please see my Morning Report post “Family First,” July 18, 2013, for a summary of two of the presenters in this session and the connection to our healing garden work in Topsfield, MA.

Moving forward with a listening heart,
vision, inquiry & action,
~ Mary

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