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, Alzheimers Association Elaine Brown, Ph.D., FAAIDD Chief Psychologist ADSD/State of Nevada Developmental
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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
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many diseases or conditions that cause a loss of cognitive functioning
– Most common form of dementia – Loss of memory, difficulty communicating, reasoning, learning – Behavioral changes – Fatal
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Reversible Dementias Vascular Dementia
Lewy Body Disease Frontal-temporal Dementia
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Alzheimer’s Disease Lewy Body Dementia Frontal Temporal Dementia Vascular Dementia Alcohol Related Depression Metabolic Problems Medications: adverse reactions Infections Brain Tumors Sensory Loss Nutritional Deficiencies
Irreversible (90%) Potentially Reversible (10%)
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Normal Brain Alzheimer’s Brain
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US
and symptoms after age 65
reaches 50%
years; average is 8 years
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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 3. People with Down syndrome tend to get Alzheimer’s 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 5. It’s impossible to diagnose Alzheimer’s in a person with ID/DD. T/F
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incidence of dementia and Alzheimer’s disease matches the general population
risk with age holds true
with Down syndrome
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– Carries code for the protein that contributes to formation of plaques and tangles – Increased risk for developing Alzheimer’s
– 10-20% at ages 40-49 – 20-50% at ages 50-59 – 30-75% at age 60+
plaques and tangles
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– Average age at onset is 50 – Precocious aging
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loss of skills
confusion
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in different people
– Changes in memory and orientation – Personality changes – ADL/IADL decline – Mental skill decline
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Changes in memory: short-term memory issues Changes in personality: decreased interest in hobbies, work, social interactions Changes in mood or behavior: 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
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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
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– Incidence 1 birth 650-1000
– in prevalence 350,ooo in
US
– 1983 median 25 years
– 1997 median 49 years
– Current = approx 60 years
– Number of adults with Down syndrome age 40 years or above projected to increase by 100% between now and 2045
Bittle tles s et al., , 2006 Quanhe et al., ., 2002 Rondal, l, 2009 Larse sen & Kirke kevo vold ld, 2008 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
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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
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69 years who were free of dementia
health or psychiatric disorders but decline in cognitive functioning and social skills.
– take variability into account to develop targeted interventions – identify age appropriate support – slow a loss, prevent decline, support quality of life
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
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National Task Group on Intellectual Disabilities and Dementia Practices (NTG)
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aadmd.org/n d.org/ntg tg
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aadmd.org/n d.org/ntg tg
23 NTG- Consensus Recommendations for Evaluation and Management
– 9 step approach
baseline
– Key components
– Include at least 1 standardized tool (e.g., DSDS, DSMSE)
24 NTG- Consensus Recommendations for Evaluation and Management
– Never occurs without investigating contributing factors and common conditions
– Non-pharmacologic and pharmacologic treatment
– Pharmacological – little evidence about efficacy, safety and tolerability – Majority – communication, environmental and behavioral strategies
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aadmd.org/n d.org/ntg tg
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aadmd.org/n d.org/ntg tg
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– 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
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– 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?
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Source: National Task Group on Intellectual Disabilities and Dementia Practice, 2012, ‘My Thinker’s Not Working.’
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Aging Services
Family Care
Living (Dementia Competent)
(such as skilled nursing facilities)
Developmental Services
Living
Environment (Dementia Competent)
(such as skilled nursing facilities)
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– Changing residential environments may increase difficulties, disorientation, raise levels of anxiety, and may lead to problem behaviors. – Movement to another setting should be:
routines, places, people, and things; inclusive information helping new caregivers know the individual’s story and who he or she is and has been.
– Just because an individual has dementia does not mean they need institutionalized care. All other options and supports should be exhausted prior to this type of care option.
Sources: rces: Janicki icki, , M., 2012, , Socia cial l Care re Issu sues s and Strate tegie ies s & & Jokin kinen et al., , 2013, , NTG Guid ideli lines s for Structu cturi ring Community ity Care re
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stable living in their home and to support the family:
– Respite – Home modifications/adaptions – Planning: prevention of crisis (e.g., needing to move homes, advance directives, etc.) – Support groups for family caregiver(s) – Help and education from Alzheimer’s organization – Involvement with parent, sibling and family member groups – Inform members of the home (including roommates) about dementia and how they can help the individual – Provide memory aides to assist with cues, locations of items and identity of self.
Source: rce: Janicki icki, , M., 2012, , Socia cial l Care re Issu sues s and Strate tegie ies
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social care model that builds off neighborhood residential care and keeps the individual in their community.
needs and support (person centered planning).
policy development
Source: rce: Janicki icki, , M., 2012, , Socia cial l Care re Issu sues s and Strate tegie ies
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challenges
education, care and best practices to help and support individuals within the residence
care
Source: rce: Janicki icki, , M., 2012, , Socia cial l Care re Issu sues s and Strate tegie ies
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necessary.
access
maintain community living
decline, increasing lighting and reducing glare should be considered
Sources: rces: Janicki icki, , M., 2012, , Socia cial l Care re Issu sues s and Strate tegie ies; s; Bail iley, y, K., , Workin king with Clients with Alzheimer’s and Deve velo lopmenta tal l Disa sabil ilitie ties; s; & Jokin kinen et al., ., 2013, , NTG Guide ideli lines s for Struct ructuri ring Community ity Care re
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assist when necessary
simple
minimum
behavior
Sources: rces: Janicki icki, , M., 2012, , Socia cial l Care re Issu sues s and Strate tegie ies; s; Bail iley, y, K., , Workin king with Clients with Alzheimer’s and Deve velo lopmenta tal l Disa sabil ilitie ties; s; & Jokin kinen et al., ., 2013, , NTG Guide ideli lines s for Struct ructuri ring Community ity Care re
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pain and symptom management. Hospice services may be appropriate for the individual during this stage
haven’t already)
self-direct and be left alone for long periods of time.
– Long-term continued independent living is not always an option, but neither is institutionalization a necessary outcome.
Sources: rces: Janicki icki, , M., 2012, , Socia cial l Care re Issu sues s and Strate tegie ies; s; Bail iley, y, K., , Workin king with Clients with Alzheimer’s and Deve velo lopmenta tal l Disa sabil ilitie ties; s; & Jokin kinen et al., ., 2013, , NTG Guide ideli lines s for Struct ructuri ring Community ity Care re
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visual stimuli
include:
– Strategies used to continue to find and reflect the individual (things they remember, activities enjoyed in the past and unconditional companionship). – The ability to identify needs that are not being well- expressed (pain, hunger, thirst, discomfort, fear, grief, illness, etc.)
Source: rce: Bish shop, , K., 2014 & Jokine kinen et al., ., 2013, , NTG Guid ideli lines s for r Structu cturi ring Community ity Care re
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– Keep living arrangement, environment and routines familiar, safe and stable as possible – Some environmental adaptations and modifications may need to be made when appropriate (e.g., accessibility, lighting, flooring, color contrasts, etc.)
routines to best support the individual
stimulating events
Sources: rces: Janicki icki, , M., 2012, , Socia cial l Care re Issu sues s and Strate tegie ies; s; Bail iley, y, K., , Workin king with Clients with Alzheimer’s and Deve velo lopmenta tal l Disa sabil ilitie ties; s; & Jokin kinen et al., ., 2013, , NTG Guide ideli lines s for Struct ructuri ring Community ity Care re
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should be revised to emphasize:
– Standardization of routines so the person is able to manage their own day and living situation to the greatest extent possible – Continuation of community participation, including day programs – Focus on skill maintenance rather than skill acquisition – Modifications in the home/day program and/or its routine so that the individual's community participation and quality of life is maintained
Source: rce: Jokin kinen et al., ., 2013, NTG Guide ideli lines s for Struct ructuri ring Community y Care re
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making
person
skills, personal worth, basic trust and security in environment and others.
Source: rce: Bail iley, y, K., Workin king with Clients with Alzheimer’s and Developmental Disa sabil ilitie ties
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“The individual’s likes and dislikes should be determined, as well as his or her wishes for care now and in the future and who they identify as best able to express their wishes when they are no longer able to do so. To the extent possible, these expressions of choices should be formalized in advance directives and should influence all care planning, including end-of-life care.”
Source: rce: Jokin kinen et al., ., 2013, NTG Guide ideli lines s for Struct ructuri ring Community y Care re
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and direct their own lives to the best of their abilities, without the “need” for guardianship.
choices and decisions using the help they need and want .
person you support need help making, the type of help needed, and
provide support, when they will provide it, and how. These plans can be shared with others, including the individual’s health care “team.”
Source: rce: Natio tional Reso source rce Cente ter for Supported rted Decisi cision-Makin king: : Everyo ryone has s the Right t To Make ke Choice ices
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that care and supports of adults with an intellectual disability affected by dementia take place as much as possible in community settings. In most instances, continued community living is viable and warranted both from a human rights and best practices perspective. With appropriate supports and supervision most, if not all, adults with an intellectual disability can continue to reside in some type of community living setting and enjoy an enhanced quality of life.”
Source: rce: Jokin kinen et al., ., 2013, NTG Guide ideli lines s for Struct ructuri ring Community y Care re
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and Developmental Disabilities. Finger Lakes Geriatric Education Center. Lee Center, NY.
Disability and Dementia: National Task Group on Intellectual Disabilities and Dementia Practices. 53(1), pages 2-29.
Review, 8(4), pages 14-18.
NC on June 18, 2012.
June 18, 2012.
Intellectual Disabilities and Dementia Practices. (2013). Guidelines for Structuring Community Care and Supports for People With Intellectual Disabilities Affected by Dementia. Albany NY: NTGIDDP & Center for Excellence in Aging & Community Wellness.
www.supporteddecisionmaking.org
Thinker’s Not Working’: A National Strategy for Enabling Adults with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports.
2013 NIH/ACL Alzheimer’s Webinar Series.
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– Can be used to create contract and visual cues (e.g., dark painted wall and white light switch, light colored walls and dark colored grab bars); reduce attention and visibility in specific areas of the home (exits when individual is wandering); tableware that offers contrasting colors to the foods being served); use solid colors or simple patterns instead of complicated/unusual designs.
– Use lighting to avoid shadows (visual illusions); disperse direct sunlight with curtains or tinted glass; indirect lighting is helpful to avoid glares (dimmer switches and nightlights can also be helpful); and reduce reflective surfaces (e.g., buffed and waxed floors).
– Reduce sounds and improve acoustics through the use of carpeting, acoustic tiles, curtains and other sound absorbing materials; reduce ambient sound levels associated with the TX and extraneous music; design and encourage the use of quiet spaces.
– Use a non-patterned flooring that has a matte versus high gloss finish; eliminate rugs as they are a potential risk for falls; ensuring flooring is even and at the same height whenever possible. Sometimes it can be helpful to provide floor makers to aid with wayfinding, as people with dementia may look down while walking.
– Use furniture that is sturdy, simple, versatile and has rounded edges versus sharp; arrange furniture to create clear pathways; secure items that might easily be tipped over (e.g., lamps and coat racks); consider height and placement of objects and signage when a person is standing and seated.
– Label cupboards for visual cues (with pictures not text); provide safe storage for kitchen tools, liquids, powders; install shut-off switches on appliances; and regulate water temperature on taps..
– Grab bars, raised toilet seats; shower chairs; hand-held shower; and regulate water temperature on taps..
– Provide safe outdoor space for walking and wandering, install ramps to assist with gait difficulties and using walking aides; alert systems can be installed if need if all other tools to prevent wandering have been exhausted.
(Jokinen et al., 2013, NTG Guidelines)
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– A hard time expressing themselves – Rational Thought – Understanding instructions – Making Choices and Decisions – Remembering what was said
– Talk to the person in a place free of distractions – Look directly at the person and make sure you have their attention before speaking – Be at eye level with the individual – Speak clearly and talk in an easy-going and familiar manner – Use concrete terms and familiar words – Ask simple yes/no questions & short sentences (Bailey, K., Working with Clients with Alzheimer’s and Developmental Disabilities)