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

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

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

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

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

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

Forms of Dementia Dr. Eborn will address this slide

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

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

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

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