dementia and developmental disabilities: supporting individuals … · 2015-12-09 · developmental...

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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

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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

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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

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Dementia

Reversible

Dementias

Vascular Dementia

Alzheimer’s Disease

Lewy Body Disease

Frontal-temporal

Dementia

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Irreversible vs. Reversible Dementia


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%)

Dementia

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The Effects

Normal Brain Alzheimer’s Brain

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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

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Alzheimer’s and the Disability 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

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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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

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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

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Down Syndrome and


• 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

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You May Notice…

• Decline in abilities and/or loss of skills

• Deterioration in personality or behavior

• Poor memory and/or confusion

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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

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General Symptoms

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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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

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The Numbers….

• Down syndrome

– Incidence 1 birth 650-1000

– in prevalence 350,ooo in US

• Life expectancy

– 1983 median 25 years

– 1997 median 49 years

– Current = approx 60 years

• Aging

– Number of adults with Down syndrome age 40 years or above projected to increase by 100% between now and 2045

And More than the numbers…

Bittles et al., 2006

Quanhe et al., 2002

Rondal, 2009

Larsen & Kirkevold, 2008

Source: Tsao, et al., 2015 Variability of the Aging Process in Dementia-Free Adults with Down Syndrome

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Normative Aging

• Aging 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


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Normative Aging

• 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


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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

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NTG – aadmd.org/ntg

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aadmd.org/ntg

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aadmd.org/ntg

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NTG- Consensus

Recommendations for

Evaluation and

Management

• Evaluation

– 9 step approach

• 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)

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NTG- Consensus

Recommendations for

Evaluation and

Management

• Diagnosis – Never occurs without

investigating contributing 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

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aadmd.org/ntg

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aadmd.org/ntg

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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

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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)

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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?

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Plan of Care…

• Increased support

• Nutritional considerations

• Communicating with healthcare personnel

• Make a difference in a life

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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

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• “Primary care and supports for adults with an intellectual disability

affected by dementia can be primarily

provided within the community and

appropriate services can preclude

institutionalization.”

Source: National Task Group on Intellectual Disabilities and Dementia Practice, 2012, ‘My Thinker’s Not

Working.’

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Living Environments

Aging Services

• Independent Living and Family Care

• Group Homes and Assisted Living (Dementia Competent)

• Institutional care (such as skilled nursing facilities)

Developmental Services

• Independent and Supported Living

• Family Care

• Intensive Supported Living Environment (Dementia Competent)

• Institutional care (such as skilled nursing facilities)

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Living Environment Cont.

• Things to be mindful of: – Changing residential environments may increase difficulties,

disorientation, raise levels of anxiety, and may lead to problem behaviors.

– Movement to another setting should be:

• A last resort; planned for and not abrupt; person centered and focused on continuation of the living environment upon moving; retain familiar 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: Janicki, M., 2012, Social Care Issues and Strategies & Jokinen et al., 2013, NTG Guidelines for Structuring

Community Care

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Living Independently or with

Family

• Services that may be put into place to help individual remain 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: Janicki, M., 2012, Social Care Issues and Strategies

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Group Home and Supported Living

Arrangement Care

• Individual’s with ID and dementia could benefit from a social care model that builds off neighborhood residential care and keeps the individual in their community.

• Programs and services to accommodate the individuals needs and support (person centered planning).

• Resources for staff members: training, education and policy development


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Community Dementia-Capable

Residence

• “In-place progression” model

• Physically designed to accommodate changing needs and challenges

• Track progression and changes in function

• Train and inform staff to stay up to date with current education, care and best practices to help and support individuals within the residence

• Prepare for the future: advance directives & end of life care


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Early Stage of Dementia

• Significant changes in residence and activities are not usually necessary.

• Maintain routines, social interactions and familiar environments

• Make appropriate adaptations in the home for safety and ease of access

• Modify level of supervision and hands on assistance as needed

• Simplify activities and modify expectations

• Identify and plan to remediate the environmental challenges to help maintain community living

• Brighter lighting has been found to positively affect cognitive decline, increasing lighting and reducing glare should be considered

Sources: Janicki, M., 2012, Social Care Issues and Strategies; Bailey, K., Working with Clients with Alzheimer’s and

Developmental Disabilities; & Jokinen et al., 2013, NTG Guidelines for Structuring Community Care

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• Increase prompts & hands-on care

• Preserve function with modifications in person’s daily living and assist when necessary

• Simplify routines as much as possible and keep verbal requests simple

• Keep changes in environment or daily routine to an absolute minimum

• Use redirection or distraction to reduce anxiety or repetitious behavior

• Refrain from attempting to teach new skills

Middle Stage of Dementia



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Late Stage of Dementia

• Attention to keep individual hydrated • Continuous supervision likely to be necessary • Reorganize care management toward non-ambulatory care • Institute procedures to maintain dignity, comfort, and address

pain and symptom management. Hospice services may be appropriate for the individual during this stage

• Organize end-of-life support and post-death arrangements (if haven’t already)

• Dementia is a condition that lessens an individual’s ability to 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.



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Environmental Adaptations

• Change environment and approach to care, not the person • Eliminate fall hazards • Create safe pathways • Reduce unnecessary and disturbing background noises, glare,

visual stimuli • Create an environment for peace, calm and joyful moments

• Dementia-capable environmental adaptations should also

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: Bishop, K., 2014 & Jokinen et al., 2013, NTG Guidelines for Structuring Community Care

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Environment & Stability

• People need anchors of stability

– 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.)

• Simplify the environment, tasks and routines to best support the individual

• Allow adequate rest between stimulating events

• Use levels or clues to remind of things or placements of items

• Practice patience and re-direction



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Plans of Support

• The plans in place to best support the individual 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: Jokinen et al., 2013, NTG Guidelines for Structuring Community Care

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Quality of Life

• Support individual in managing daily life and decision making

• Keep individuals in their familiar environment

• Look out for their psychological well being – be mindful of possible depression

• Implement the desires and previous passions of the person

• Opportunity to age in place

• Promote engagement in activities that help maintain skills, personal worth, basic trust and security in environment and others.

Source: Bailey, K., Working with Clients with Alzheimer’s and Developmental Disabilities

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Empowerment

“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.”


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Supported Decision-Making

• Everyone has the Right to Make Choices, make their own decisions and direct their own lives to the best of their abilities, without the “need” for guardianship.

• Supported Decision-Making allows individuals to make their own choices and decisions using the help they need and want .

• To get the plan started: think about the type of decisions you or the person you support need help making, the type of help needed, and when. You can create a written plan stating the people who will provide support, when they will provide it, and how. These plans can be shared with others, including the individual’s health care “team.”

Source: National Resource Center for Supported Decision-Making: Everyone has the Right To Make Choices

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• “The National Task Group (NTG) recommends 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.”


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Questions and Comments

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References

• Bailey, K. Working with Clients with Alzheimer’s and Developmental Disabilities. Alzheimer’s Association of Orange County.

• Bishop, K. (2014). National Task Force on ID and Dementia Care Practices: Dementia and Intellectual and Developmental Disabilities. Finger Lakes Geriatric Education Center. Lee Center, NY.

• Bishop, K. et al. (2015). Guidelines for Dementia-Related Health Advocacy for Adults With Intellectual Disability and Dementia: National Task Group on Intellectual Disabilities and Dementia Practices. 53(1), pages 2-29.

• Dodd, K. (2003). Supporting People with Down's Syndrome and Dementia. Tizard Learning Disability Review, 8(4), pages 14-18.

• Janicki, M. (2012) Social Care Issues and Strategies, and Program Options. NTG Workshop in Charlotte, NC on June 18, 2012.

• Janicki, M. (2012). Overview of Basic Issues in Aging and Dementia. NTG Workshop in Charlotte, NC on June 18, 2012.

• Jokinen, N., Janicki, M.P., Keller, S.M., McCallion, P., Force, L.T., and the National Task Group on 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.

• National Resource Center for Supported Decision-Making: Everyone has the Right To Make Choices. www.supporteddecisionmaking.org

• National Task Group on Intellectual Disabilities and Dementia Practice. (2012). Executive Summary: ‘My 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.

• Ryan, L., Keller, S., Lott, I. (2013). People with Intellectual or Developmental Disabilities and Dementia. 2013 NIH/ACL Alzheimer’s Webinar Series.

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Dementia Focused

Environmental Modifications • Color

– 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.

• Illumination/Lighting

– 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).

• Noise

– 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.

• Flooring

– 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.

• Furniture

– 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.

• Kitchens

– 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..

• Bathrooms

– Grab bars, raised toilet seats; shower chairs; hand-held shower; and regulate water temperature on taps..

• Outdoors

– 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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Communication

• Sometimes people with dementia will experience: – A hard time expressing themselves – Rational Thought – Understanding instructions – Making Choices and Decisions – Remembering what was said

• Things to think about when you speak: – 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)

dementia and developmental disabilities: supporting individuals … · 2015-12-09 · developmental...

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