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“STANDING IN THE GAP”
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STANDING IN THE GAP
An outreach program on Memory Loss andAlzheimer’s Disease for African Americans
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STANDING IN THE GAP
Standing in the Gap is a reference to each individual’s moral responsibility to
be of service to others in need.
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African Americans: Who are we?
The term “African American” refers to people having origins in any of the
Black race groups of Africa, as well as people of African descent from
Caribbean Islands and parts of South America.
Each of these groups has distinct cultural and social identities.
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African Americans: Who are we?
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African Americans: Who are we?
Today, African Americans represent close to 13% of the population. There are 2.7 million African Americans age 65 and
over and by the year 2050, it is projected that this number will increase
to 8.6 million.
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Illness and Survival
Many African Americans perceive their success on the individual, familial, and cultural levels in terms of enduring a
lifetime of oppressive and discriminatory actions. In spite of these actions,
African American elders passed on values, beliefs and wisdom to their
families.
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Illness and Survival
Lives can be seen as successful, but it is believed that the price of
enduring such pressure is experiencing mental and/or physical health problems.
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Cultural Behaviors Associated with Memory Loss and Dementia
“Worration”Combination of worry and stress and
thought by many to cause damage to the brain. It is believed that one can actually
overuse one’s mind to the detriment of the brain. That is, “thinking too much” or “too
much head work.”
Cultural Behaviors Associated with Memory Loss and
Dementia
Falling OutPresents as a loss of
consciousness and a physical collapse.
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Cultural Behaviors Associated with Memory Loss and Dementia
High BloodIs a condition in which the blood is not
flowing normally through the body.It is thicker or sweeter and therefore, believed to be stagnating in the higher
area (head, chest) of the body. When the pressure of “too much blood” occurs you develop memory problems.
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Culture, Memory Loss and Dementia
“I just thought it was a part of getting older.”
“She had suffered such a lifetime of worries and my father was not very good to her.”
“My mom was the backbone of the family. Everyone looked up to her. She took on everybody else’s problems. It was the pressure.”
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“STANDING IN THE GAP”
What is senility?
What is dementia?
What is Alzheimer’s disease?
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What is Senility?
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What is Senility?“Oh, she’s just senile”
Senility is not a medical term. Senile means “of, or relating to advanced age.”
Senility does not refer to dementia.
Dementia is NOT normal aging.
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What is Dementia?
Dementia is an umbrella term that refers to a general loss of
intellectual abilities involving memory, judgment, language,
abstract thinking as well as changes in personality.
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Irreversible causes of dementia
Alzheimer’s diseaseVascular DementiaParkinson’s diseaseHuntington’s diseasePick’s diseaseCreutzfeld Jakob diseaseLewy Body DementiaAIDS and at least 70 other conditions
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Alzheimer’s Disease
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Alzheimer’s Disease
Alzheimer’s disease is the most common form of dementia. It is a progressive,
degenerative brain disease with gradual onset. The course of the disease can range from 8 years to as many as 20
years. Alzheimer’s disease is irreversible.
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Alzheimer’s Disease
Causes a steady decline in the ability to:Remember and LearnThink and ReasonCommunicate and RespondLive independently
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Alzheimer’s Disease Statistics
0%10%20%30%40%50%60%70%80%90%
100%
65-74 yrs 75-84 yrs 85+ years
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10 Warning Signs
Recent memory loss that affects job performanceMisplacing things Problems with languageDisorientation to time and placePoor or decreased judgment
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10 Warning Signs
Problems with abstract thinkingDifficulty performing familiar tasksChanges in mood or behaviorChanges in personalityLoss of initiative
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Alzheimer’s Disease
Family History
Race???
Advanced Age High Blood Pressure High Cholesterol
Risk Factors
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The Silent Epidemic
Alzheimer’s disease is more prevalent among African Americans than
among whites – with estimates ranging from 14% - 100%
higher.
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The Silent Epidemic
There is a greater familial risk of Alzheimer’s in African Americans.Genetic and environmental factors may work differently to cause Alzheimer’s disease in African Americans.
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The Silent Epidemic
A person with a history of either high blood pressure or high cholesterol is twice as likely to develop Alzheimer’s disease.African Americans have a 60% higher risk of type 2 diabetes – a condition that contributes to vascular disease.African Americans have a higher rate of vascular dementia than white Americans.
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Alzheimer’s Disease Stages - Mild
Can still take care of their personal needs and may still be in the workforceHave trouble with finding names for common itemsLoses things more often
May begin to ask the same question over and overGets lost easily in places well knownPersonality changes may occurLoses interest in things once enjoyed
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Alzheimer’s Disease Stages - Moderate
Display anxiety or depressionExperiences difficulty with simple activitiesPace excessivelyMay hallucinate or become paranoid
Requires close supervisionBecomes more confused about recent eventsArgue more than usualMay wander
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Alzheimer’s Disease Stages - Severe
No longer able to communicateUnable to recognize themselves when they look into the mirror
Can not care for themselves Unable to recognize family membersMay be bed-bound and become totally debilitated
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Diagnosing Alzheimer’s Disease
Patient historyPhysical examinationLaboratory testsNeuropsychological testing
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Diagnosing Alzheimer’s Disease
Patient History should include the following:
Medical HistoryFocused HistoryFamily History
Social and Cultural History
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Diagnosing Alzheimer’s Disease
Medical History –Physicians should ask about relevant diseases: psychiatric disorders, history
of head trauma, review information about infections or illnesses such as pneumonia, diabetes, urinary tract infections or chronic renal failure.
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DiagnosingAlzheimer’s Disease
Medical History -The review of all medications is a critical
component of the assessment because drug toxicity is the most common cause of
dementia that can be resolved.
A wide range of drugs have been associated with cognitive changes. Patients should bring all medications to the appointment including,
over the counter pills.
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Diagnosing Alzheimer’s Disease
Focused History –It must identify signs and symptoms such
as difficulty learning and retaining new information, handling complex tasks, reasoning ability, spatial ability and orientation, language and exhibits
behavior problems.
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Diagnosing Alzheimer’s Disease
Family History –Physician should inquire about a family
history of the Alzheimer’s disease especially early on-set or other rare genetic conditions that might lead to
dementia.
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Diagnosing Alzheimer's Disease
Social and Cultural History -
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Diagnosing Alzheimer’s Disease
Social and Cultural History –Include information about recent life events and social support networks, literacy, socioeconomic, ethnic and
cultural background. These factors may affect performance on mental status
examinations.
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Diagnosing Alzheimer’s Disease
Physical Examination –Standard medical principles should be used to guide a physical examination as
a part of the assessment process.
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Diagnosing Alzheimer’s Disease
Mental Status Examination -Though not diagnostic they are used to:
Develop a clinical picture along with functional performance; provide
baseline data for monitoring over time; and can document multiple cognitive
impairments.
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Diagnosing Alzheimer’s Disease
Mental Status Examination -
Factors such as age, primary language, educational level and cultural influences
should be taken into consideration in the interpretation of mental status
scores.
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Diagnosing Alzheimer’s Disease
Laboratory Tests –
Complete Blood Count (CBC), electrolyte panel, screening for metabolic panel,
thyroid gland function, B-12 and folate levels, tests for syphilis and depending on history for
human immunodeficiency antibodies, urinalysis, ECG, chest X-ray, CT and an EEG.
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Diagnosing Alzheimer's Disease
African Americans tend to be
diagnosed at a later stage of Alzheimer’s
disease – limiting the effectiveness of
treatments that depend upon early
intervention.
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The Importance of Early Diagnosis
Early diagnosis may help the person with dementia:Educate him/herself on the diseaseLearn to manage the diseaseParticipate in their own care planningMake legal and financial arrangements
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Disease Management
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Disease Management
Currently, there is no cure for the disease, but there are 3 drugs on the market to
help reduce some of the symptoms associated with the disease. They are:
Aricept (donepezil) Exelon (rivastigmine)
Reminyl (galantamine)
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Disease Management
African Americans are seriously underrepresented in current clinical
trials of potential treatments for Alzheimer’s disease.
This has occurred even though evidence of genetic differences and response to drugs varies significantly by race and
ethnicity.
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Disease Management
Physical exerciseCalm and well-structured environmentProper nutritionPleasurable social activitiesAdequate sleepIdentify what activities cause problem behaviors
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Caring for the person with dementia
The person with dementia is not:Faking or trying to get on your nervesTrying to drive you crazySeeking attentionThe recipient of a hex or a curse
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Caring for the person with dementiaRemember:
Difficult behaviors are the result of the disease
Persons with dementia are not able to learn new information or “just try a little harder”
You, not they, will have to changeYour relationship will change
Denial, anger and depression are normal reactions
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Now, what do I do?
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Now, what do I do?The Lord never puts more on us than we can handle
Contact the local chapter of the Alzheimer’s Association.
“There is no time like the present”
Learn more about the disease.“What you don’t know can hurt you”
Talk to family members, friends or clergy.“This is the first day of the rest of your life”
Take advantage of community resources. “It is always darkest before the dawn”
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STANDING IN THE GAP
The Alzheimer’s Association is the only national voluntary organization
dedicated to conquering Alzheimer’s disease through research and to
providing information and support to people with Alzheimer’s disease, their
families and caregivers.
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STANDING IN THE GAP
Alzheimer’s Association Core ServicesInformation and ReferralCare ConsultationEducational ProgramsSupport GroupsSafe Return
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Information and Referral
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STANDING IN THE GAP
Information and ReferralInformation and Referral services provide
information about AD, services provided by the chapter and community
resources. Service delivery may include Helplines, the Contact Center,
information packets, websites or resource libraries.
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STANDING IN THE GAP
Care ConsultationAssists the person with the disease and/or their
families by providing information and making appropriate referrals, supportive listening,
assessment of needs, developing an action plan or problem solving. This can be done by
telephone, e-mail, or in person.
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Educational Programs
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STANDING IN THE GAP
Educational ProgramsProvide individuals with knowledge and
skills necessary to enhance the quality of care for a person with dementia. May
be carried out through caregiver conferences, community programs, in-
service trainings for professionals, newsletters or using videos.
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STANDING IN THE GAP
Support GroupsLearning that you are not in this alone can be
beneficial. Supports groups are regularly scheduled in-person or virtual gatherings of
persons with AD, family, friends or caregivers who interact around issues relating to AD.
Groups have social, educational and/or support components and are lead by a
trained individual.
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Support Groups
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STANDING IN THE GAP
Safe ReturnIs an identification program that assists in
the safe and timely return of individuals with AD who wander or become lost.
Safe Return provides family support, wandering awareness and on-going
education and training opportunities to emergency personnel as well as to the
lay community.
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STANDING IN THE GAP
What Can You Do?Become an Advocate – Make your voice
heard. You can make a difference.Volunteer with the local chapter of the
Alzheimer’s Association.Help others learn about Alzheimer’s disease
and available resources.Stand in the Gap!
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STANDING IN THE GAP…
for you and your loved ones.
