Aging, Dementia, and Developmental Disabilities March 3, 2016 Seth M. - - PDF document
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
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
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
9
- 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
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
13
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
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
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
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
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
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
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
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