Aging, Dementia, and Developmental Disabilities March 3, 2016 Seth M. - - PDF document

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Aging, Dementia, and Developmental Disabilities March 3, 2016 Seth M. - - PDF document

Aging, Dementia, and Developmental Disabilities March 3, 2016 Seth M. Keller, MD Past President AADMD Co Chair National Task Group on ID and Dementia Practices Nothing to Disclose Changing US Population Demographics Aging and Intellectual and


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SLIDE 1

Aging, Dementia, and Developmental Disabilities

March 3, 2016

Seth M. Keller, MD Past President AADMD Co‐Chair National Task Group on ID and Dementia Practices

Nothing to Disclose

Changing US Population Demographics

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SLIDE 2

Aging and Intellectual and Developmental Disabilities ▪ In 2002, an estimated 641,000 adults with IDD were

  • lder than 60.

▪ In 2002 about 75% of all older adults with IDD were in

the 40‐60 year old age range.

▪ The number of adults with IDD age 60 years and

  • lder is projected to nearly double from 641,860 in

2000 to 1.2 million by 2030 due to increasing life expectancy and the aging of the baby boomer generation

Carter & Jancar, 1983, Janicki, Dalton, Henderson, & Davidson, 1999

  • Currently estimated life

expectancy of a 1‐year‐old child with DS is between 43 and 55 years

Curr Gerontol Geriatr Res. 2012; 2012: 412-536.

  • 25% of persons with

Down syndrome are still alive at 65 years

Rubin & Crocker,2006; Yang Rasmussen & Friedman, 2002

Expected Physical Changes of Aging

▪ Osteopenia/Osteoporosis ‐ normal aging‐related bone loss ▪ Sarcopenia ‐ progressive loss of muscle mass ▪ Presbyopia: the lens of the eye becomes stiffer and less flexible – affecting the

ability to focus on close objects (accommodation)

▪ Presbycusis – aging related change in the ability to detect higher pitches –

more noticeable in those age 50+

▪ Gustation (i.e. the sense of taste) decrements become more noticeable

beyond 60+

▪ Olfaction (i.e. the sense of smell), decrements become more noticeable after

age 70+

▪ Somatosensory System ‐ Reduction in sensitivity to pain, touch, temperature,

proprioception

▪ Vestibular – Reduction in balance and coordination ▪ Cognitive – Reduction in short term memory loss, attention, and, retrieval

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SLIDE 3

Individual Aging Process

Susceptibility to disease Individual organ systems age differently Social and cultural factors Compensatory behaviors + access to resources Lifestyle Genetic predisposition

Gender

Diversity of the Aging Process

Cognitive Reserve Plasticity

Successful Aging

Optimal Aging

“A kind of utopia, namely, aging under development enhancing and age‐friendly environmental conditions”

Baltes, P. B., & Baltes, M. M. (1990). Psychological perspectives on successful aging: The model of selective optimization with compensation. In P. B. Baltes & M. M. Baltes (Eds.), Successful aging: Perspectives from the behavioral sciences (pp. 1–34). New York: Cambridge University Press

Successful Aging

  • Avoidance of disease and (additional) disability
  • Maintaining mental and physical function
  • Sustained engagement in social and productive activities

Rowe, J. W., & Kahn, R. L. (1997). Successful

  • aging. The Gerontologist, 37, 433‐440

Modifiable versus Unmodifiable Factors for Successful Aging

  • Age
  • Gender
  • Genetics
  • Ethnicity

Unmodifiable

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SLIDE 4
  • Eat a balanced and healthy diet (and

supplements)

  • Maintain a healthy weight
  • Exercise on a regular basis (include weight

bearing exercises)

  • Manage stress / allow time for relaxation ‐
  • Don’t smoke (and avoid secondary smoking!)
  • Education (promote lifelong learning)
  • Occupation (esp. promotes curiosity, or working

with people)

  • Leisure activities (mental, social, physical)
  • Enriching relationships (evolving)
  • Living in a nurturing/clean physical environment

Modifiable Factors for Successful Aging

Optimizing Successful Aging for Older Adults with IDD

  • Health promotion/health prevention ‐ Wellness screenings

(e.g. vision/hearing, dental checkups, cancer screenings, mammograms).

  • Psychological well‐being ‐ advocate to ensure availability of
  • ptimal treatments/medications for those with dual

diagnosis (e.g. anxiety, depression).

  • Important to offer a range of new activities, that may result in

continuing personal development and compensatory skill building.

  • Effective epilepsy management.
  • Avoiding Polypharmacy
  • Involve families and support team

Life Course Health Promotion

▪ A balancing act of guiding philosophies. Autonomy & “Duty of Care” Self‐direction

Increasing Age

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SLIDE 5

Leading Causes of Death, Adults 65+ Years, 2010

Rank Cause of Death

1 Heart disease 2 Cancer 3 Chronic lower respiratory diseases 4 Stroke 5 Alzheimer’s disease 6 Diabetes 7 Influenza and pneumonia 8 Kidney disease 9 Accidents (unintentional injuries) 10 Septicemia

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Heron M. Deaths: Leading causes for 2010. National vital statistics reports; vol 62 no 6. Hyattsville, MD: National Center for Health

  • Statistics. 2013

IDD Conditions and Aging

▪ Genetic conditions

▪ Prader‐Willi syndrome

▪ Psychosis and behavioral changes ▪ Obesity‐related adverse

  • utcomes

▪ Williams syndrome

▪ Premature memory loss ▪ Problems in multiple organ

systems

▪ Fragile X syndrome

▪ Fragile X‐associated

tremor/ataxia syndrome (FXTAS)

▪ Down syndrome

▪ Premature aging ▪ Early onset dementia

▪ Non‐specific conditions

▪ Autism spectrum disorders

▪ Mental health aspects

(depression, etc.)

▪ Medication effects (long

term)

▪ Cerebral palsy

▪ Deconditioning ▪ Cervical spondylotic

myelopathy

▪ Pain ▪ Osteoporosis ▪ GI & GU issues

Cognitive Changes with Aging

▪ Normal changes = more forgetful & slower to learn ▪ MCI – Mild Cognitive Impairment =

▪ Immediate recall, word finding, or complex problem solving

problems (½ of these folks will develop dementia in 5 yrs)

▪ Dementia = Acquired chronic thinking problems in > 2 areas ▪ Delirium =Rapid changes in thinking & alertness

(seek medical help immediately )

▪ Depression = chronic unless treated, poor quality , I “don’t

know”, “I just can’t” responses, no pleasure can look like agitation & confusion

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SLIDE 6

The Diagnosis of Dementia

  • An acquired syndrome consisting of a

decline in memory and other realms of cognitive functioning

  • At least one of the following deficits
  • Language difficulties (aphasia)
  • Difficulty with common tasks (apraxia)
  • Unable to identify common objects (agnosia)
  • Disturbance in executive functioning
  • Planning, judgment, decision making

Source: Diagnostic and Statistical Manual of Mental

  • Disorders. DSM-IV

Alzheimer’s Disease

  • Early - Young Onset
  • Normal Onset

Vascular Dementias (Multi-infarct) Lewy Body Dementia

DEMENTI A

Other Dementias

  • Genetic syndromes
  • Brain injury
  • ETOH related
  • Drugs/toxin exposure
  • Multiple Sclerosis
  • Tumor/radiation
  • Depression(?) or Other

Mental conditions

  • Infections – BBB cross
  • Parkinson’s
  • NPH

Fronto- Temporal Lobe Dementias

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SLIDE 7

Alzheimer’s Disease

▪ First described by Alois Alzheimer in 1906 ▪ Described pathologic changes ▪ Emil Kraepelin coined the term Alzheimer’s

disease

(1864-1915) Auguste Deter

Alzheimer’s Disease Pathology Amyloid plaques and neurofibrillary tangles (NFT).

Natural history of Alzheimer’s Disease

1 2 3 4 5 6 7 8 9 5 10 15 20 25 30 Time (years) Symptoms Diagnosis Loss of functional independence Behavioural problems

Specialized supportive care

Death Mini-Mental State Examination (MMSE)

Early diagnosis Mild-to- moderate Severe

Feldman and Gracon. The Natural History of Alzheimer’s Disease. London: Martin Dunitz, 1996

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SLIDE 8

Alzheimer’s Disease in Down Syndrome

  • “In not a few instances, however death was

attributed to nothing more than general decay‐sort of precipitated senility”. Fraser and Mitchell (1876)

  • Senile plaques seen in brains of those with
  • DS. Jervis (1948)
  • Uncommonly can have rapid progression

and death.

  • Late onset seizures were evident in 73.9%;

with epilepsy dx at mean age of 55.4, and interval of about ½ year following dx of dementia.

Percentage of people with Down syndrome who develop dementia at different ages: Age percentage with clinical signs

  • f dementia

30’s 2% 40’s 10‐15% 50’s 33% 60’s 50‐70%

Source: Neil, M. (2007). Alzheimer's dementia: What you need to know, what you need to do. Understanding intellectual disability and health. Accessed from http://www.intellectualdisability.info/mental‐ health/alzheimers‐dementia‐what‐you‐need‐to‐know‐what‐ you‐need‐to‐do.

Fraser, J, Mitchell, A., (1876). Kalmuc idiocy: report of a case with autopsy with notes on 62 cases. Journal of Mental Science 22, 161. Jervis, GA. Early senile dementia in mongoloid idiocy. (1948) The American Journal of Psychiatry, 105, 102-106. Oliver, C., Holland, AJ (1986) Down Syndrome and Alzheimer’s disease: a review. Psychological Medicine 16, 307-22.

Diagnosis of I/DD and Dementia

  • Suspicion that pathologic decline in cognitive

function is occurring; must be aware of prior baseline level of functioning

  • Avoid Diagnostic Overshadowing
  • Use of early warning screening and EDSD
  • Neurocognitive assessments
  • Workup and rule out/rule in accurate diagnosis
  • Empiric diagnosis; Possible, Probable, Definite
  • Usage of Biomarkers
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SLIDE 9

Diagnosis of I/DD and Dementia

  • Suspicion that pathologic decline in cognitive

function is occurring; must be aware of prior baseline level of functioning

  • Avoid Diagnostic Overshadowing
  • Use of early warning screening and EDSD
  • Neurocognitive assessments
  • Workup and rule out/rule in accurate diagnosis
  • Empiric diagnosis; Possible, Probable, Definite
  • Usage of Biomarkers

Diagnosis of I/DD and Dementia

  • Suspicion that pathologic decline in cognitive

function is occurring; must be aware of prior baseline level of functioning

  • Avoid Diagnostic Overshadowing
  • Use of early warning screening and EDSD
  • Neurocognitive Assessments
  • Workup and rule out/rule in accurate diagnosis
  • Empiric diagnosis; Possible, Probable, Definite
  • Usage of Biomarkers

Alzheimer’s Disease Biomarkers

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SLIDE 10

Percent persons with Down syndrome showing evidence of neurofibrillary tangles (NFT) and senile plaques (SP) at autopsy Nelson, L. D. et al. Arch Neurol 2011;68:768‐774.

Representative Amyloid Scans in DS and AD

Mann, D.M.A. (1993). Association between Alzheimer disease and Down syndrome: Neuropathological

  • bservations. In J.M. Berg, H. Karlinsky, & A.J. Holland

(Eds.),Alzheimer disease and Down syndrome and their relationship (pp. 71-92). Oxford University Press

Challenges to diagnosis and care

  • Individuals with I/DD may not be able to report signs

and symptoms

  • Subtle changes may not be observed
  • Commonly used dementia assessment tools are not

relevant for people with I/DD

  • Difficulty of measuring change from previous level of

functioning

  • Conditions associated with I/DD maybe mistaken for

symptoms of dementia ‐ Diagnostic overshadowing

  • Aging parents and siblings
  • Lack of research, education, and training

Realistic Goals of Dementia Treatment ▪ Attenuate cognitive and functional decline ▪ Prevent / decrease behavioral and

psychiatric symptoms

▪ Delay nursing home placement ▪ Lengthen period of self‐sufficiency ▪ Reduce caregiver burden

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SLIDE 11

Community Care Needs of Adults with ID and Dementia

▪ Dementia is a condition that lessens an

individual’s ability to self‐direct and be left alone – thus long‐term living on ones’ own may not be an

  • ption as the disease progresses.

▪ Aging in Place/In Place Progression/Aging Out ▪ What are the needs?

▪ In home supports (to family caregivers and the person) ▪ Advanced planning for alternative care ▪ Diagnostic, medical and behavioral health care ▪ Support groups for caregivers (family or staff) ▪ Dementia capable community housing ▪ Day care programs and respite for family caregivers ▪ Usage of technology/telehealth

Change in Focus of Supports Provided ▪Maintaining skills ▪Stabilizing the environment ▪Minimizing choices ▪Giving reassurance ▪Personal care ▪Assessing and meetings medical

needs

▪Meaningful activities Staff Levels and Training

▪ Appropriate levels of staffing ▪ Dementia specific training ▪ Maintaining and preserving skills vs. learning

new skill

▪ Pain recognition and management ▪ Addressing concerns about reactions and

actions related to the disease

▪ End of life care, the dying process and grieving

for themselves and roommates

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SLIDE 12

Support for Grieving and End of Life Care

▪ Support teams for staff and roommates ▪ Pastoral care for families, staff and roommates ▪ Staff discussions around their beliefs and

concerns

▪ Families values and beliefs around death and

dying

▪ Utilizing hospice and palliative care ▪ Arrangements for final farewells

Seth M Keller, MD Matthew P. Janicki, PhD NTG Co‐Chairs sethkeller@aol.com mjanicki@uic.edu http://aadmd.org/ntg

Thank You!!