Transcript Slide 1

DEMENTIA CARE IN DIVERSE
POPULATIONS: DISPARITIES IN
DIAGNOSIS AND ACCESS TO CARE
20 July 2015
RISK FACTORS
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FOR DEMENTIA
Age: The likelihood of developing Alzheimer’s doubles about every five
years after age 65. After age 85, the risk reaches nearly 50 percent.
Family History: Those who have a parent, brother or sister, or child
with Alzheimer’s are more likely to develop Alzheimer’s. The risk
increases if more than one family member has the illness.
Heredity: Scientists have identified one Alzheimer risk gene called
apolipoprotein E-e4 (APOE-e4). Those who inherit one copy of APOE-e4
have an increased risk of developing Alzheimer’s. Those who inherit two
copies have an even higher risk, but not a certainty.
Influencing Risk Factors
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Head Injury
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Vascular Problems
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General Health
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DISPARITIES IN DIAGNOSIS
African Americans are at greater risk for
Alzheimer's
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Language and societal barriers delay
diagnosis for many Hispanics
DISPARITIES IN DIAGNOSIS
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Diagnosis is the identification of a disease from its signs and symptoms
Individuals of different cultures are diagnosed with dementia at different
rates. This may be due to:
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Language and educational barriers
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Bias in screening tests
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“Normalization” by caregivers
Findings show that among Medicare beneficiaries, African Americans
were diagnosed disproportionately more than whites; 5% compared to 3.9%
Findings show that false positive screening tests classify 42% of black
Americans without dementia as being demented, versus only 6% of
whites.
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DISPARITIES IN ACCESS TO CARE
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Minority populations face barriers in accessing dementia care:
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Cultural barriers (language)
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Educational barriers
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Socio-economic barriers
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Geographic barriers
Illness attributions shape decisions in adhering to treatment
 Viewing dementia as a serious condition rather than “normal aging”
Evidence-based research on culturally competent dementia care is limited
 More research is necessary to train professionals on outreach and the
provision of good care
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DIFFERENCES IN PERCEPTION
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Perception is the process, act, or faculty of perceiving. It is the ability to
identify, interpret, and attach meaning.
Cultural values and beliefs among different ethnic groups affect the
meanings they assign to dementia. Having dementia is perceived by
different cultures as:
 An expected part of aging,
 Being crazy,
 Having bad blood, or
 Being possessed
Perceptions of dementia affect:
 Access,
 Diagnosis, and
 Treatment
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DIFFERENCES IN PERCEPTION
Findings show that:
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Race is more powerful than family or caregiving history in
explaining differences in illness perceptions.
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African Americans show less awareness of facts regarding
Alzheimer’s Disease than Whites.
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African Americans report having fewer number of sources of
information about Alzheimer's Disease than Whites.
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African Americans perceive Alzheimer’s Disease as less of a
threat than Whites.
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STUDY ONE: PERCEIVING AND GIVING
MEANING TO DEMENTIA
Inclusion Criteria: Caregiver, family relative of care recipient. Care recipient, >
60 years old, currently living in the community, and diagnosed with
dementia in the past three years.
Sample: 25 families : 10 African American, 5 American Indian and 10 White
(N=80) . Multiple family caregivers in each family: average of 3 per family
members per family, range of 2-6 caregivers per family.
Care Recipients : Average age 78, all live with primary caregivers; diagnosed with
Alzheimer’s disease or vascular dementia.
Caregivers: Majority are wives and daughters; average age 60
Study Design: Qualitative study, 2-3 hour family group interviews in the home
of the primary caregiver.
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STUDY ONE: PERCEIVING AND GIVING
MEANING TO DEMENTIA
Inclusion Criteria: Caregiver, family relative of care recipient. Care recipient, >
60 years old, currently living in the community, and diagnosed with
dementia in the past three years.
Sample: 25 families : 10 African American, 5 American Indian and 10 White
(N=80) . Multiple family caregivers in each family: average of 3 per family
members per family, range of 2-6 caregivers per family.
Care Recipients : Average age 78, all live with primary caregivers; diagnosed with
Alzheimer’s disease or vascular dementia.
Caregivers: Majority are wives and daughters; average age 60
Study Design: Qualitative study, 2-3 hour family group interviews in the home
of the primary caregiver.
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STUDY ONE: PERCEIVING AND GIVING
MEANING TO DEMENTIA
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Medically Underserved Areas/Populations are areas or populations designated by
HRSA as having: too few primary care providers, high infant mortality, high
poverty and/or high elderly population. Health Professional Shortage Areas
(HPSAs) are designated by HRSA as having shortages of primary medical care,
dental or mental health providers and may be geographic (a county or service area),
demographic (low income population) or institutional (comprehensive health center,
federally qualified health center or other public facility)
Health Resources and Services Administration
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MAJOR THEMES IN CONSTRUCTING
DEMENTIA
Findings:
 Conceptualizing risk factors
 Difficulty distinguishing
 Gender role performance or violations
 Culminating events
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MAJOR THEMES IN CONSTRUCTING
DEMENTIA
Findings:
Conceptualizing risk factors
All groups associated old age with memory loss
Whites unlike any other groups believed females are more likely to
experience memory loss
African Americans unlike others associated inactivity of the brain as a risk
factor
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Difficulty distinguishing
African American s more than others viewed care recipients’ symptoms as
normal
Whites were likely to see behavior as an overlap with previous behavior
All groups viewed symptoms as a performance
Whites were more likely to recognize a problem when care recipient violated
conventional gender roles
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MAJOR THEMES IN CONSTRUCTING
DEMENTIA
Findings:
Gender role performance or violations
For women, often tied to appearance and domesticity
For men, often tied to skills and activities
Caregivers less likely to see a problem when care recipient fulfilled conventional
gender roles
Culminating events
Diagnosis by a physician during a visit for another condition (e.g., knee surgery, heart
problems)
Events that resulted in safety concerns (e.g., getting lost in a car for a day, burning
down the house)
Summary themes
White families more likely to recognize behaviors as a sign of serious illness without a
culminating event
Black families more likely to identify dementia when it consumed more of the
personality
American Indians more likely to view dementia as a role performance problem
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STUDY TWO: SOCIAL CONSTRUCTIONS OF
CAREGIVING (N=171)
Majority of Caregivers:
 Are between the ages of 51 and 60 years (33.3%)
 36.5% of African Americans, 31.6% of Caucasians
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Work Full Time (31.6%)
 44.4% of African Americans, 24.5% of Caucasians
 Of the 26.9% who are unemployed, most are retired
Are College Graduates (40.4%)
 44.4% of African Americans, 34.7% Caucasians
Are Married (59.6%)
 46% of African Americans, 68.4% of Caucasians
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STUDY TWO: SOCIAL CONSTRUCTIONS OF
CAREGIVING (N=171)
Majority of Care Recipients:
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117 ( 68%) have memory loss problems ; 65% diagnosed , majority of
those diagnosed are White.
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Average Age of Care Recipient: 81 years of age
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Race of Care Recipients:
 37% African-American
 57% Caucasian
 6% Other
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Live with Caregiver:
 65% of Caregivers live with Care Recipient
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SOCIAL CONSTRUCTIONS OF CAREGIVINGFINDINGS
Community values that influence providing care
Response
Count (N=171)
- Provide a social network
20
- Community values have no bearing
37
- Cultural expectations
12
- Keep in home environment
6
- Other influences of community values
56
- Not applicable/Don’t Know
41
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* Multiple responses may have been reported by each caregiver.
SOCIAL CONSTRUCTIONS OF CAREGIVINGFINDINGS
Services available in community to help caregivers
o The most reported services available in communities included:
o Support groups
o Meals on wheels
o Church
o Respite care
o Home care seminars and workshops
o Home care agencies
o Caregiving facilities
o Each caregiver reported an average of 1.22 services in their community.
o 25% of caregivers reported that there were no services in their community, or that
they did not know of any.
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SOCIAL CONSTRUCTIONS OF CAREGIVINGFINDINGS
Services are available in community to assist elders
o The most reported services available in communities included:
o Nursing homes
o Meals on Wheels
o Home health aides/ Home health agencies
o Assisted living facilities
o Senior centers
o Transportation
o Church
o Adult day care
o Each caregiver reported an average of 1.92 services in their community.
o 12% of caregivers reported that there were no services in their community, or that
they did not know of any.
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SOCIAL CONSTRUCTIONS OF CAREGIVING FINDINGS
Elder care in community
Response
Count (n=171)
- Caregiving facilities
70
- By family members (at home)
73
- Senior centers
4
- Help from community
13
- In-home aides
20
- On their own
6
- Other
10
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* Multiple responses may have been reported by each caregiver.
C0NCLUSIONS
Dementia diagnosis is a family affair
Giving meaning to dementia is constructed within the context of families
Gender identity and roles are important in recognizing dementia
Competence and lack of it is not necessarily linked to memory loss
A medical diagnosis is given after a cultural and social diagnosis is negotiated in
the family
A medical diagnosis must fit within the framework of the family
Caregiver reported very low use of services, with an average of 1.22 services in
their community
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ACKNOWLEDGEMENTS
Research Assistants:
Monique Cohen
Geraldine Pierre
Funding :
IIRG-03-4609 (Dilworth-Anderson) 02/01/2004-01/31/2007
Alzheimer’s Association
Perceiving and Giving Meaning to Dementia Among Caregivers
R24 HS013353 (Howard) 12/01/2005–11/30/2009
Agency for Healthcare Research and Quality
Shaw University M-RISP Minority Elderly Research (Summer) Center
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