Dementia and Developmental Disabilities: Supporting Individuals in - PowerPoint PPT Presentation

Dementia and Developmental Disabilities: Supporting Individuals in Maintaining Quality Life Tracy Smith, MA Family Services Manager, Alzheimer’s Association Elaine Brown, Ph.D., FAAIDD Chief Psychologist ADSD/State of Nevada Developmental Services Michelle Rubinstein, MSW Mental Health Counselor ADSD/Sierra Regional Center 1

Objectives • Understanding Dementia • Best Practices • Models of Support • Program options and services to equip teams with the information and resources needed to maintain living in the community. • Various living arrangement models • Social support strategies • Strengths of the individual • Resources/Handouts 2

What is Dementia? • Dementia: umbrella term that includes many diseases or conditions that cause a loss of cognitive functioning • Alzheimer’s Disease – Most common form of dementia – Loss of memory, difficulty communicating, reasoning, learning – Behavioral changes – Fatal 3

Dementia Reversible Frontal-temporal Dementias Dementia Vascular Dementia Lewy Body Disease Alzheimer’s Disease 4

Irreversible vs. Reversible Dementia Dementia Irreversible Potentially Reversible (90%) (10%)  Depression  Alzheimer’s Disease  Metabolic Problems  Lewy Body Dementia  Medications: adverse  Frontal Temporal reactions Dementia  Infections  Vascular Dementia  Brain Tumors  Alcohol Related  Sensory Loss  Nutritional Deficiencies 5

The Effects Alzheimer’s Brain Normal Brain 6

Who Gets Alzheimer’s? • 5.4 million people in US • Typically see signs and symptoms after age 65 • By age 85, risk reaches 50% • Duration from 3 to 20 years; average is 8 years 7

Alzheimer’s and the D isability World 1. People with an ID/DD are at a higher risk for Alzheimer’s than the rest of the population. T/F 2. People with Down syndrome are at a higher risk for Alzheimer’s than the rest of the population. T/F People with Down syndrome tend to get Alzheimer’s 3. at an earlier age. T/F 4. Life expectancy for someone with Down syndrome and Alzheimer’s is the same as a typical person with Alzheimer’s. T/F It’s impossible to diagnose Alzheimer’s in a person 5. with ID/DD. T/F 8

Alzheimer’s in the Intellectual Disability World • The prevalence and incidence of dementia and Alzheimer’s disease matches the general population • Pattern of increased risk with age holds true • Exception is for people with Down syndrome 9

Down Syndrome and Alzheimer’s • Born with extra copy of chromosome 21 – Carries code for the protein that contributes to formation of plaques and tangles – Increased risk for developing Alzheimer’s • Prevalence not widely agreed upon… – 10-20% at ages 40-49 – 20-50% at ages 50-59 – 30-75% at age 60+ • At autopsy, all individuals over 40 years have plaques and tangles 10

Down Syndrome and Alzheimer’s Disease • At risk for early onset Alzheimer’s – Average age at onset is 50 – Precocious aging • Duration of disease on average is 4.8 years • Tends to be more rapid decline • Always variation among individuals 11

You May Notice… • Decline in abilities and/or loss of skills • Deterioration in personality or behavior • Poor memory and/or confusion 12

Dementia and Down Syndrome: What to Expect • Never progresses in exactly the same way in different people • Common signs/symptoms include: – Changes in memory and orientation – Personality changes – ADL/IADL decline – Mental skill decline • Late onset seizures also common 13

General Symptoms Changes in memory : short-term memory issues Changes in personality : decreased interest in hobbies, work, social interactions Changes in mood or behavio r: exaggerated character traits Changes in functioning : quality of work, ability to do household chores, more supervision over ADLs Problems with language : speech fluency, decreased response when spoken to Disorientation : loses way in familiar surroundings, day/night reversal, familiar objects 14

General Symptoms Gait changes : stumbling more, needs more assistance walking Incontinence : changes in managing toileting, more frequent accidents Loss of school-acquired skills : reading and writing worsening, change in ability to use numbers, in ability to do usual arts & crafts, play instrument Seizures * Based on individuals prior level of functioning 15

The Numbers…. And More than the numbers… • Down syndrome – Incidence 1 birth 650-1000 – in prevalence 350,ooo in US Rondal, l, 2009 • Life expectancy Quanhe et al., ., 2002 – 1983 median 25 years – 1997 median 49 years – Current = approx 60 years • Aging Bittle tles s et al., , 2006 – Number of adults with Down syndrome age 40 years or above projected to increase by 100% between now and 2045 Larse sen & Kirke kevo vold ld, 2008 16 Source: rce: Tsao, , et al., ., 2015 Vari riabili lity ty of the Agin ing Proce cess ss in Dementia tia-Fr Free Adults lts with Down wn Syndrome rome

Normative Aging Source: rce: Tsao, , et al., ., 2015 Vari riabili lity ty of the Agin ing Proce cess ss in Dementia tia-Fr Free Adults lts with Down wn Syndrome rome • A ging vs. Alzheimer’s • Dementia free adults with Down syndrome – similar aging process to general population but occurring earlier • For other intellectual/developmental disabilities, incidence of dementia and Alzheimer’s disease matches the general population • Conclusion: Considerable variability 17

Normative Aging Source: rce: Tsao, , et al., ., 2015 Vari riabili lity ty of the Agin ing Proce cess ss in Dementia tia-Fr Free Adults lts with Down wn Syndrome rome • Study: 120 adults with Down syndrome age 20 to 69 years who were free of dementia • Daily living skills decline after 40 years • No age-related increase in prevalence of mental health or psychiatric disorders but decline in cognitive functioning and social skills. • Conclusion: – take variability into account to develop targeted interventions – identify age appropriate support – slow a loss, prevent decline, support quality of life 18

National Task Group on Intellectual Disabilities and Dementia Practices (NTG) • Formed in 2010 – role to examine and report on the needs of adults with dementia and intellectual disabilities • Passage of National Alzheimer Project Act in 2011 • U.S. Department of Health and Human Services (DHHS) 2012 – National Plan to Address Alzheimer’s Disease • Track the progress of the National Plan to address Alzheimer’s Disease relative to intellectual disabilities 19

NTG – aadmd.org/ntg 20

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NTG- Consensus • Evaluation Recommendations for – 9 step approach Evaluation and Management • historical description and baseline • medication review • family history • psychosocial issues/changes • Physical Examination – Key components • Cognitive Assessment – Include at least 1 standardized tool (e.g., DSDS, DSMSE) 23

• Diagnosis NTG- Consensus Recommendations for – Never occurs without Evaluation and investigating contributing Management factors and common conditions • Treatment – Non-pharmacologic and pharmacologic treatment • Majority is “non” – Pharmacological – little evidence about efficacy, safety and tolerability – Majority – communication, environmental and behavioral strategies 24

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Health Advocacy Considerations • Comorbidities related to presence and stage of dementia (seizures, cardiovascular and respiratory disease, gait disturbance, depression, incontinence) • Health advocacy play a prominent role in extending physical wellness • NTG recommends health advocate – represent the interests of adults suspected of or impacted by dementia – ensure all health matters receive attention – initiate and follow through with health system contacts 30

Health Advocacy Considerations • Informant present • Caregivers trained on noting symptoms, documenting, and conveying • Education for local healthcare practitioners • Agencies/communities draw upon a dementia resource team • Start the conversation with health practitioner (routine or ad hoc visit) 31

Sharing information • After a diagnosis, practitioner should be able to answer the following questions: – Where is the adult in the progression? – What can be expected in terms of duration and decline? – What type of dementia is it? – How do comorbidities effect progression? – What is potential for any short or long-term medications? 32

Plan of C are… • Increased support • Nutritional considerations • Communicating with healthcare personnel • Make a difference in a life 33

Objectives • Understanding Dementia • Best Practices • Models of Support • Program options and services to equip teams with the information and resources needed to maintain living in the community. • Various living arrangement models • Social support strategies • Strengths of the individual • Resources & Handouts 34