Matthew P. Janicki, [email protected]
Nordic Conference on Intellectual Disability and Dementia
Uppsala, Sweden ● 22 November 2010
B
Anticipating Onset and ChangeDifferential Effects of Types of DementiaFactors and ModelsAssessing Quality
Anticipating Onset and ChangeDifferential Effects of Types of Dementia
Factors and Models
Assessing Quality
Providing adequate and appropriate care and services to people with intellectual disabilities (ID) affected by dementia
Knowing what are the presenting problems
Looking at what the natural environment offers
Adapting the environment to accommodate changes
Knowing how decline will progress and what behaviors may be evident and when
Continuing to adapt environment, including supports
Planning forward
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when “onset” occurs having readily available assessment and
diagnostic services special needs in early stage – mostly early
memory loss and frustration due to noticed changes
training for creating “dementia-capable” environments, whether at home or in programs
preparing for eventual loss of capabilities (e.g., advance directives, housing, financial instruments, etc)
accommodating late stage care
Onset is speculative . . .
– the best we can do is identify that
point when significant change or
impairment has become noticeable
- in some people noticeable changes
have been proceeded by MCI –
“mild cognitive impairment”
- early 50s for DS – late 60s for ID
Janicki 8
Note difference between DS (yellow)and other ID (green)
Source: janicki, M.P. & Dalton, A.J. (2000). Prevalence of dementiaand impact on intellectual disability services. Mental Retardation,38, 277-289
0
2
4
6
1 2 3 4 5
Hypothetical test scores on series of performance measures over 5 years
Although all generally begin at about same level, different rates of decline occur over time
Lack of training among clinicians
Lack of knowledge of assessment protocols to assess dementia
Lack of assessment services
Lack of familiarity with identifying dementia among medical practitioners
Confusion by symptoms and misdiagnosis
Assessment challenges
Memory loss
Difficulty performing familiar tasks
Problems with language
Disorientation to time and place
Poor or decreased judgment
Problems with keeping track of things
Misplacing things
Changes in mood or behavior
Changes in personality
Loss of initiative
Alzheimer’s Disease International
Janicki 13
► Family brings in adult with ID/DS or raises concern Acute or chronic duration changes
► Problems identified during office visit memory/thinking problems symptoms (weight loss, appearance,
functional difficulties) trigger suspicions
self-report
► Problems identified in health setting nursing or other staff note problems dementia identified in emergency
room, hospital, etc
► Problems identified in community friends, neighbors, church members,
or others report
accidents or falls at home
police referral
confusion and disorientation (getting lost)
► Problems identified within residential setting Noticeable disorientation
Strange behaviors, such as hoarding, wandering constantly, new shadowing, etc.
Loss of interest and notable change in personality
[Source: adapted from Boise et al., 1999 - The Gerontologist]
Applying screening and assessment measures
Controversy as to whether this is intrusive
Balance privacy vs. risk
Benefits
Pick up on early warning signs
Helpful with early differential dx
Associate with data from biomarkers
Easy ways to collect quick impressionistic data
Protocol for recording a set of signal performance tasks and behaviors linked to potential early expression of dementia
Can be used as part of the individual’s permanent record or program plan to periodically track changes in behaviors that might indicate cognitive and motor changes associated with dementia
Available at http://www.uic.edu/orgs/rrtcamr/recordingbehav.htm
Difficult behavior
Fragility
Dementia
Terminal illness
Potential of dying
Age
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Compromising behaviors Agitation
Combativeness and aggression
Resistance
Catastrophic reactions or extremes in emotional response
Suspiciousness
Delusions, and hallucinations
Sundowning
Wandering
Nuisance behaviors
Rummaging
Hiding
Hoarding
Shadowing
Repetitive activities
Pica (eating non-food
things)
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Compromising behaviors Agitation
Combativeness and aggression
Resistance
Catastrophic reactions or extremes in emotional response
Suspiciousness
Delusions, and hallucinations
Sundowning
Wandering
Nuisance behaviors
Rummaging
Hiding
Hoarding
Shadowing
Repetitive activities
Pica (eating non-food
things)
Source: Alzheimer’s Disease: Unraveling the Mystery. (n.d.). US Dept of Health & Human Services
Source: Figure 1 from Wilkosz et al., (2009). Trajectories of cognitive decline in Alzheimer’s disease. International Psychogeriatrics, 28,1-10.
Varying trajectories may be a function of the etiology and nature of the dementia, the health of the person, and/or measurement artifacts
Varying trajectories have implications for continual assessment and adaptations to care management
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• Retrogenesis is the process by which degenerative mechanisms reverse the order of acquisition in normal development• The functional stages of AD precisely and remarkably mirror the acquisition of the same functional landmarks in normal human development • The stages of AD can be translated into corresponding developmental ages and the age-associated needs can be used to account for the overall management and care needs of adults
with AD
Development Decline
years years
[Reisberg et al. (2002). Evidence and mechanisms of retrogenesis in Alzheimer's and other dementias: management and treatment import. Am J Alzheimers Dis Other Demen, 17(3):169-74]
Measures of risk of death due to dementia include: Age
Shortness of breath
Bowel incontinence
Weight loss
Using the 12-item Advanced Dementia Prognostic Tool (ADEPT) –the higher the score the higher the risk of death
Difficult to predict mortality in persons with dementia
High-quality palliative care is prescribed toward end-of-life
Hospice care is recommended
Source: Prediction of 6-Month Survival of Nursing Home Residents With Advanced Dementia Using ADEPT vs Hospice Eligibility Guidelines. Susan L. Mitchell; Susan C. Miller; Joan M. Teno; Dan K. Kiely; Roger B. Davis; Michele L. Shaffer. JAMA. 2010;304(17):1929-1935.
The limitations of defining onset are understood
There is familiarity with symptoms
Assessments are sensitive and targeted toward picking up functional change
Assessments discriminate rationale for decline or change
Assessments help identify trajectories
Assessments help define nature of care adaptations
Anticipating Onset and Change
Differential Effects of Types of DementiaFactors and Models
Assessing Quality
Dementia is a term delineating a set of behavioral presentations… generally associated with memory loss or impairment, behavioral decline, and changes in overall personal functioning
However, changes due to dementia may have different ‘faces’ and progression depending of the etiology and nature of the neuropathology
Knowing the underlying cause of the dementia can help with planning care and estimating future needs
Diagnostic precision
Potential medication treatment variations
Developing expectations of residual life years
Setting up care management plans on expected behavioral presentations and progression
Communication and interaction variations
Projecting expectations for change in care needs
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AD w/
Parkinson's
16%
Other
5%
VAD or
Parkinson's
19%
Alzheimer's
(AD)
60%
Lewy body, fronto-temporal, etc.
VAD: Vascular Dementia
Vascular dementia►Abrupt onset►Underlying vascular
disorder present (e.g., hypertension, heart disease)
►Early impairment in motor skills
►Brain scan shows evidence of strokes or related changes
Alzheimer’s disease►Gradual onset,
relentless progression►Underlying vascular
disorder not always present
►Deterioration in a broad range of intellectual disabilities
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Dementia with Levy Bodies
FrontotemporalDementia
Alzheimer’s Disease
Dx of dementia plus two of the following features:
(1) prominent fluctuation in cognition and alertness(2) recurrent visual hallucinations(3) spontaneous motor features of parkinsonism (not drug-induced)
Early personality change and abnormal behavior; loss of social graces; marked change in character and disordered interpersonal conduct; emotional blunting with loss of empathy and sympathy; “hyperorality” (overeating, food fads, smoking and oral exploration of objects)
Early memory loss, spatial disorientation and language deficits; late personality change (interpersonal skills, social graces, manners are preserved until later in the disease)
Visual hallucinations include seeing people, animals or objects
Depression, delusions, repeated falls and syncope (fainting)
Working memory tends to be worse, episodic memory tends to be better, and sematicmemory tends to be equal to patients with AD
Speech output reduced, adynamic – later mutism
Memory variable
Visuospatial function preserved
SPECT: anterior
hypoperfusion
EEG: normal
Fluent aphasia with poor comprehension
Severe amnesia
Spatial disorientation
SPECT: posterior
hypoperfusion
EEG: slow
Source: Alzheimer's Association. (2010). Changing the trajectory of alzheimer’s disease: A national imperative. Accessed on July 11, 2010, from http://www.alz.org/documents_custom/trajectory.pdf
Proportion of Americans Age 65 and Older with Alzheimer’s Disease by Stage of Disease, 2010–2050
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EARLY or MILD
STAGE
2 to 4 years or longer
MID- or MODERATE
STAGE
2 to 10 years
Compressed staging for adults
with Down syndrome
LATE or SEVERE
STAGE
1 to 3 years of longer
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Early Stage Middle Stage Late Stage
Confusion and
memory loss
Disorientation in
space
Problems with
routine tasks
Changes in
personality and
judgment
Difficulties with ADLs [“activities of daily
living”]
Anxiety, paranoia, agitation and other compromising behaviors
Sleep difficulties
Difficulty recognizing familiar people
Loss of speech
Loss of appetite, weight loss
Loss of bladder and bowel control
Loss of mobility
Total dependence on others
Generally most people with ID will have Alzheimer’s dementia … some will have other types
Knowledge of the nature and course of the type of dementia will help with program design and planning
Anticipating Onset and Change
Differential Effects of Types of Dementia
Factors and ModelsAssessing Quality
Environmental supports
Primary care practices
Program applications
• Compensate for cognitive losses and disorientation
• Support safety and mobility
• Offer protection against injury and disease
• Minimize behaviors that disrupt the equilibrium of the home or pose a danger to self or others
• Help maintain dignity and skills
Windows or doors that are hard to open
Poor lighting, particularly in kitchen or bathroom
Rugs, irregular floors and other tripping hazards
Tubs and showers that are hard to use
Stair widths or heights that are difficult to negotiate
Appliances and utensils that are challenging to use
Poor layout of rooms, such as bathroom distant from bedroom
Source: Brody, J. , Lifestyle tweaks to make aging easier. International Herald Tribune, October 27, 2010, p. 14.
Cognitive symptoms Impairment in memory, language, attention,
visuospatial and executive functions
Behavioral symptoms Depression, agitation, delusions, hallucinations, sleep
disorders
Impairment in activities of daily living Instrumental, social and basic functions
Source: Emre, M. (2005). Managing treatment expectations. Presentation at 21st Conf of Alzheimer’s Disease International, Istanbul, Turkey
Cognitive symptoms
Impairment in memory, language,
attention, visuospatial and
executive functions
Behavioral symptoms
Depression, agitation, delusions,
hallucinations, sleep disorders
Impairment in activities of daily
living
Instrumental, social and basic
functions
Source: Emre, M. (2005). Managing treatment expectations. Presentation at 21st Conf of Alzheimer’s Disease International, Istanbul, Turkey
Use of clinicians experienced with dementia
Continue assessment and behavioral observations
In-service training and consultation with staff/carers
Personal supports to adults affected
Specialty teams to help with program planning
ΨRN
SW
Rethinking how daily life and
regular activities are approached
Lessening stimulation,
while promoting
involvement and challenge
Modifications in communication
methods
Supporting residual skills
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Differential rates of decline
Different effects by type of dementia(Alzheimer’s vs. vascular vs. other)
Stage-specific needs (mid- vs. late)
If Down syndrome, differences in rate of
decline, onset, duration
If at home, supports provided to carers education on dementia, respite, adaptations to home
Being affected by dementia generally will mean that independent living (without any co-sharing) will be impossible
Small group home care is becoming the most viable alternative to institutional care
Mid 1
Early Mid 1 Mid 2 Late
Aging-
in-place• single
care home
and stable
stay
EarlyMid 1
Mid 2
Late
In-place-
progression• multiple
care homes &
movement
with progression
Mid = mid-level
Linear adaptations and care
Sequential adaptations and care
Option A Option B
Mid 2
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Small group homes seem like practical solutions to the desire of health officials and families for affordable neighborhood care
Staff-to-resident ratios need to be stage dependent e.g., more staff assigned with mid-stage ambulatory residents
Staff expertise needs to be associated with stage of care
With ambulatory residents – staff capable of engaging residual memories and capabilities, providing socialization and diversionary activities
With non-ambulatory, late-stage residents – staff capable of providing basic nursing care and careful attention to personal needs
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Dementia onset is variable but comes predictably earlier among adults with DS
Individual duration is an unknown and can only be predicted in aggressive forms
Oversight will be needed beginning with the latter early stage
Personal care and behavioral oversight are the two main staff time drains
Eventual outcome will be nursing care
Do you tell an adult showing signs of dementia what ishappening?
Under what circumstances? What supports do you offer? When do you bring it up? What about advance directives, wills,
and beneficiary planning?
Pamphlet was created by Scottish Down’s Syndrome Association to use with adults with Down syndrome and intellectual disabilities
Consensus meeting held February 5-7, 2001 in Edinburgh, Scotland. Attendees drawn from research, practice, advocacy and family caring, developed a set of principles.
The principles support continued community care, a focus on the individual, designing dementia capable environments and services, and careful planning to include adults with ID and AD in generic AD services and resource allocations.
1
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The Edinburgh Principles mirror the guiding principles for community care of people with dementia in the general population; and
Reinforce the notion that people with ID affected by dementia experience the same type of challenges and can benefit from the same types of progressive services
ADI’s Global Perspective(April 2002: Vol. 12, no. 1; p.6)
Promote quality of life using a person-centeredapproach
The driving force should be individual strengths, capabilities, skills and wishes
Involve the individual, her/his family and other closest supports in all phases of assessment and services planning and provision
Plan and provide supports and services that help the person remain in his or her chosen home and community
www.uic.edu/orgs/rrtcamr/dementia
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1Adopt an operational philosophy that promotes quality of life
2 Affirm that individual strengths guide decision-making
3 Involve the individual and family in all planning & services
4 Ensure availability of appropriate DX and service resources
5 Plan & provide supports to optimize remaining in community
6 Ensure that people with ID have access to same dementia services provided to others in population
7 Ensure that community planning involves focus on adults with ID
Edinburgh Principles
Factor
Age The risk of developing Alzheimer's disease increases with age
Gender Alzheimer's disease affects women more frequently than men
Family history Fewer than 1% of Alzheimer's disease cases are inherited, mostly those with onset before age 65
Head injury Studies have shown a link between Alzheimer's disease and a significant head injury
Environmental toxins There is some suspicion that increased exposure to certain substances, such as aluminum, may make a person more susceptible to Alzheimer's disease
Low educational level Although the reason is not clearly understood, some studies have shown that low education levels can be related to an increased risk for Alzheimer's disease
Other factors Research also suggests that high cholesterol levels and high blood pressure -- factors linked to heart disease and stroke -- may also increase the risk for developing Alzheimer's
Source: http://www.webmd.com/alzheimers/guide/causes-risk-factors
Some 50% of institutionalized adults with AD lose their ability to eat 8 years after onset
In moderately demented adults, food is often neglected and caloric intake falls
In severely demented adults, hindrance or prevention of oral nutrition occurs by aversive feeding behaviors (AFBs), such as 'refusal to eat', 'resistive‘, and 'dysphagia'
Source: [Riviere, S. (2002), Int J Geriatr Psychiatry, 17(10):950-955]
Eating (feeding) difficulties are a function of the age of the carer, the severity of dementia, and the adult’s autonomy and psychological functioning (i.e., mood and behavior disorders)
Both the adult’s level of cognitive impairment and family stress often predict which adults with AD living at home will develop eating problems
Nutritional information and support to families are effective strategies to prevent Aversive Feeding Behaviors (AFBs)
Source: [Riviere, S. (2002), Int J Geriatr Psychiatry, 17(10):950-955]
Minimizing risk factors
Overweight and obesity is found in excess
among adults with intellectual disabilities3
- which can lead to a variety of ailments
and heighten risk for dementia…
- Type 2 diabetes, high blood pressure,
raised fat levels in blood, coronary heart
disease, heart failure, stroke2
- Childhood obesity is particularly
insidious as it is highly related to higher
rates of extreme obesity when those
children reach adulthood1
- In the general population, 34% of adult
Americans (about 73m adults) are obese
(e.g., ~30 pounds or more over a healthy
weight)1
- the role models for ideal weight may be
people who themselves have excess weightSource: 1Hellmich, N., U.S. “Obesity rate appears to be leveling off…”. USA Today, 14 January 2010, p.8D; 2Smith, R. “Half of adults ‘will be obese by 2050’”, The Daily Telegraph (London), 17 October 2007, p. 6; 3Rimmer,J.H., & Yamaki, K. (2006). Obesity and intellectual disability. Ment Retard Dev Disabil Res Rev. 2006;12(1):22-7.
Source: USA Today, 2 July 2009, p. 8B
Aging is a lifelong process
Exercise, nutrition, physical and mental health, and social conditions all affect how healthy you may be in older age
“Successful Aging” means being free of disease, being active and involved in older age, and contributing to society
Anticipating Onset and Change
Differential Effects of Types of Dementia
Factors and Models
Assessing Quality
International dementia care standards/guidelines call for Provision of care with ‘dignity’ Recommended schedule of assessments and diagnostics ‘Dementia capable’ design of environments Provision and allocation of sufficiently trained staff
Quality influences for small group care include Clinical features Compensating environments Quality of life Caregiving
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Clinical features
• those aspects of a disease or condition as they interact or affect the person
Compensating environments
• characteristics of the living space - such as the number of residents per living area, the layout of the circulation system, the characteristics of the public spaces, and the programmatic use of the common and dining rooms
Qualitative aspects
• how an adult experiences the environment or perceives comfort in a situation
Caregiving
• how care is provided (that is, the mechanisms of care organization)
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The quality of care literature with respect to small group living and dementia care is still in the formative stage
Findings… Size is a factor with respect to quality
Optimally, a modest and manageable group size permits a sense of being at home, opportunities for involvement in small group activities, and engagement with familiar staff
Nature of the physical environment is a factor Design features provide for privacy and safety, facilitate activities and movement within the dwelling, and
offer gathering places for interaction that together foster functional facility
Staff and their capabilities are a factor When trained in aspects of dementia and dementia care, staff can provide a personally rewarding and
nurturing atmosphere
Quality is also affected by the characteristics of the residents and the nature of the operating principles that govern the program’s functions
Overall, blending of these features may serve as a foundational framework for general defining quality of care and quality of life in dementia care settings
Dementia Progression
Continued Assessment
Resident Behavior
Group Home Design
Care Provision
Capabilities
Staff Capabilities
Administrative Investment
Group Home Quality FactorMeasurement
Structural features Functional features
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Quality factors with applications to dementia care
• aspects related to early and appropriate assessment
• environmental modifications to a living setting
• staff education and functionality for stage-adapted care
• flexible long-term services provision that recognizes progression of decline and loss of function
A quality care model
should encompass
these general areas:
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Identification of common
quality prescriptions by dementia
organizations
Identification of factors and
features contributing
to and affecting quality
Synthesis of various
contributions to common
quality indications
Agreement on key
features that need to be present to
define acceptable
quality
Development of
measurement tools for assessing
components of quality
care
Assessment of level of
quality consistent
with prescribed presence of
key indicators
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Development of a quality of care measurement model
Analysis
Synthesis
Identification of specifics
Construction of a QC scale
Quality Outcome (scores)
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Analysis
Synthesis
Identification of specifics
Construction of a QC scale
Quality Outcome (scores)
72
Analysis
Synthesis
Identification of specifics
Construction of a QC scale
Quality Outcome (scores)
73
Analysis
Synthesis
Identification of specifics
Construction of a QC scale
Quality Outcome (scores)
74
An operational working model could be applicable internationally for adapting residential environmentsthat is made up of four critical components:
Early and appropriate periodic assessment
Environmental modifications to a living setting and dementia-friendly architecture
Staff education and functionality for stage-adapted care
Flexible long-term services provision that recognizes progression of decline and loss of function
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Usage… Consistency check with established standards
Defining components necessary for new program development
Development of compliance standards
Development and application of measurement instruments
Links to payment and reimbursement criteria
Links for remediation activities
Sources of research and evaluation data
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Matthew P. JanickiUniversity of Illinois at ChicagoChicago, Illinois [email protected]
For information on ID and dementia:
http://www.rrtcadd.org/TA/Dementia_Care/ Resources/Info.html
For access to our University website:
http://www.rrtcadd.org/index.html