1. Got diagnosis? Get a village.
How Gerda Saunders and her family created a support network to plan for her future with dementia
Opening slide while we get ready

2. Panel Participants
Moderator: Kate Nederostek, MGS, CDP: Director of Programs, Alzheimer's Association, Utah Chapter
Panel members:
Person diagnosed with dementia, Gerda Saunders
Gerda’s main supporter and caretaker, her husband Peter Saunders
The Saunders’s primary care physician, Dr. Shana Eborn, MD : Family Medicine
Kate will talk to this as introduction

3. Objectives
After attending the session, healthcare professionals will be able to assist their patients/clients and those who care for them by being able to:
Be alert to early memory changes and consider the value of a diagnosis
Develop a “dementia vocabulary,” i.e., identify elements to consider when planning for the person with dementia and their loved ones
Help them evaluate their own circumstances, needs, and resources with respect to their future plans
Help them identify family members, friends, and professionals whom they would like to involve in establishing their own dementia care plan and community
Kate will include this as introduction

4. Introduction: How Gerda and her family created a support community and a plan for their family’s future
In this presentation, panel members will speak to the following questions:
Gerda: What were the signs that led to my diagnosis? Who to tell and when?
Dr. Eborn: What does “microvascular dementia mean? What is the role of a family physician in helping dementia patients and their families move forward?
Peter: How did discussions with experts help our family create a dementia vocabulary and support community?
Kate: What is the role of the Alzheimer’s Association in supporting community members grappling with dementia?
Gerda: What was the impact and outcome of our family’s community building and planning on family members and members of our “village”?
Kate will include this as introduction

5. What were the signs that led to your diagnosis? Who did you tell?
Noticed a short-term memory loss—interfered with work and home life
First discussed memory loss with husband, Peter; then, our adult children and their spouses
Confided in my boss—accommodation in my work responsibilities
Discussed value of a diagnosis with primary care physician, Dr. Shana Eborn; decided to go for tests
Received a diagnosis of cerebral microvascular disease: Dr. Eborn will explain what that means
Gerda will address this slide

6. What does “microvascular dementia” mean?
Microvascular dementia results from damage to blood vessels supplying the brain. When brain tissue is relatively deprived of oxygen and nutrients due to narrowed or otherwise damaged blood vessels, brain function is impaired.
Major risk factors for microvascular disease are aging, high blood pressure, high cholesterol, diabetes, and smoking.
Dr. Eborn will address this slide

7. Forms of Dementia
Dr. Eborn will address this slide

8. What is the role of a family physician in helping dementia patients and their families move forward?
The family physician is:
A dementia educator
Liaison between the patient, her family, and other medical providers
Responsible to facilitate diagnosis and treatment and may also be a resource for advanced planning.
An ongoing evaluator of the patient’s condition to facilitate decisions about increased levels of care.
Dr. Eborn will address this slide

9. How did discussion with experts help your family create a dementia vocabulary and support community?
Family physician
Financial advisor
Investment planning
Social Security planning
Tax lady
Medical insurance, long term care
End-of-life plans—assisted death
Lawyer
Alzheimer’s Association: Kate
Peter to address this slide

10. What is the role of the Alzheimer’s Association in supporting community members grappling with dementia?
Connect with supportive resources in the community
Educate on disease process, what to expect
Education programs – topics include warning signs, communication and behavior, caregiving, legal and financial planning, ways to reduce your risk, and more
Provide tools to prepare for and cope with changes
Such as driving retirement, assisting with activities of daily living, safety concerns, etc.
Provide care partner/caregiver support throughout disease process
Connect with peers through support groups and social events
Inform and empower individuals living in the early stage of dementia
Learn how to move beyond the diagnosis
Kate will address this slide

11. What was the impact and outcome of your family’s community building and planning on family members and members of your “village”?
“Dementia vocabulary” enabled a safe space for communication: sharing of grief, mutual support, confidence to ask for help
Peace about the future allowed time and energy for retirement project, namely writing and social activism
Advocacy for people with dementia: article, book, blog, radio & TV interviews
A joyous life in the face of diminishment and death
Gerda will address this slide