05/03/2011 SERVICES TO SUPPORT QUALITY OF LIFE FOR PEOPLE WITH EARLY STAGE DEMENTIA MAY 5, 2011

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1 SERVICES TO SUPPORT QUALITY OF LIFE FOR PEOPLE WITH EARLY STAGE DEMENTIA MAY 5, 2011 Presented by Marsha Berry, Sara Tucker Alzheimer s Association 2 3 Challenges can either diminish or flourish you, and I choose to flourish. care partner What Lies behind us and what lies before us are tiny matters compared to what lies within us. Ralph Waldo Emerson 1

2 Objectives 4 At the end of this session participants will be able to: Define early stage Alzheimer s disease and related dementias. Name 2 evidence based tools that can be used by community health care professionals to identify dementia. List at least 3 resources for people with early stage dementia, families and professionals. Dementia 5 Loss of cognitive functioning serious enough to interfere with daily functioning. A set of symptoms, not a disease process. Recent memory Language Visuospatial Function Executive function Mild Cognitive Impairment (MCI) 1 Mild changes in memory and cognitive abilities noticeable to the person and family/friends Measurable Changes do not affect the ability to perform activities of daily living 2

3 Mild Cognitive Impairment 7 Increased risk of developing Alzheimer s disease most often when memory is most significant issue Not everyone diagnosed with MCI progresses to Alzheimer s or another type of dementia. 8 Dementia due to Alzheimer s disease Slow, progressive, degenerative disease of the brain that damages nerve cells in the brain Memory, cognitive and behavioral symptoms that impair ability to function in daily life Not reversible Fatal Early stage and Young Onset 9 Early Stage: MCI or early symptoms of dementia Young onset: Younger than age 65 with Alzheimer s disease or a related disorder at any stage of the illness 3

4 Allen Level 5: Early Dementia 10 Difficulty using complex information Problems with memory, judgment, reasoning, and planning Minor problems in conversation Difficulties performing complex daily tasks (e.g., reading, writing, calculating, managing finances, job performance, driving, meal preparation, shopping, following a medication schedule) Strengths 11 Preserved long-term memory Preserved ability to communicate and express feelings, needs, etc. Preserved ability to use compensatory strategies Preserved ability to plan / organize Preserved need for purpose / meaning Demographics 12 Currently 5.4 million with AD By 2050, million As many as 10-20% of people aged 65 and older have MCI Shifting demographics, earlier detection methods, more effective medical treatments, more vocal cohort = increased need and demand for services 4

5 Benefits of early diagnosis 13 Rule out other conditions / give name to illness Lower anxiety Start treatment early Pharmacological Non-pharmacological Understand & manage the changes Make decisions legal, financial, life Build a support team / system 14 I think it s all about empowerment. People should know what they are dealing with so they can make informed decisions for themselves as long as possible. professional from Early Stage Working group Knowing helps us get out of the isolation that seems to happen with this doggone disease. Mike Donohue, living with Alzheimer s disease Interventions 15 Care Consultation / Care Management Counseling / Group Therapy (support groups) Wellness Programs (cognitive habilitation, exercise, nutrition) Meaningful Activities (mentor programs, creative arts, outings, early day programs, social clubs, volunteer programs, advocacy, online networks, life review) 5

6 Taking Action Workbook 16 This workbook is based on the belief that we cannot let limitations interfere with what we still can do Can be used alone or with family members or friends 12 chapters that address common concerns, educational information and perspectives of people living with memory loss. Care Consultation 17 Assessment of needs Assistance with developing a care plan Assistance with resources and facilitating referrals Problem solving Providing individual and family meetings Providing education and support Providing ongoing support and follow-up Programs and Services 18 6

7 Early Stage Advisory Group 19 Members--individuals with MCI and early dementia. Engage in advocacy, education, volunteering, and support for the early stage programs Meet four times/year Early Stage Working Group Members--professionals within the community as well as families with MCI and early dementia. Provide various services for families with MCI and early dementia. Also engaged in advocacy and education. Meet two times/year Memory Club 21 Psycho-educational support program Individuals with early dementia & care partners Time-limited (10 weekly 2-hour sessions) 7

8 Memory Club - Topics 22 Understanding the disease process Common emotional & psychological reactions to diagnosis Family communication / dynamics Role identity, transformation & task sharing Memory Club - Topics 23 Honoring independence vs. taking over Safety Concerns / driving Partnering with the doctor Practical planning for the future Coping Strategies & harbors of strength Memory Club Significant Results 24 Care partners' perceived effectiveness in dealing with care tasks increased Memory partners' perceived effectiveness in carrying out daily tasks increased Care partners' and members' satisfaction with Memory Club was high Dr. Joseph Gaugler, American Journal of Alzheimer s Disease & other Dementias 8

9 Memory Alumni Club 25 Support group for those who have completed the Memory Club (again includes both care partner and people with early dementia) 10 day brain and body wellness program Cognitive Rehabilitation Medical Disease management Emotional Health Exercise and movement Wellness Education Walker Art Center 9

10 Minneapolis Institute of Arts Adult day program for early to middle stages dementia Various locations Meeting times What they do Memory Adventure Purpose Day program for people with early dementia Meets at Augustana in Minneapolis Meets twice a week Social connection, Memory enhancement strategies, Journaling, volunteer work, and cultural adventures 10

11 Memory Meetup & Mentor 31 Social gatherings online and in the community for individuals with MCI, Early Alzheimer disease Mentors with MCI and Early Alzheimer s disease contact newly diagnosed individuals to connect with and invite them to social gatherings. Meeting once a month Group members participate in designing the group Fax Referral Program 32 Allows physicians to fax patient/family consent for Alzheimer s Association staff to speak directly to them after an early diagnosis has been made Often people are overwhelmed with news of diagnosis Contact 33 Sara Tucker Early Stage Services Manager Minnesota-North Dakota Sara.tucker@alz.org 11

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