an education and outreach program on memory loss, dementia and alzheimer’s disease for african...

An education and outreach program on memory loss, dementia An education and outreach program on memory loss, dementia andand

Alzheimer’s disease for African AmericansAlzheimer’s disease for African Americans

““STANDING IN THE GAP”STANDING IN THE GAP”


Standing in the Gap is a Standing in the Gap is a reference to each reference to each individual’s moral individual’s moral

responsibility to be of responsibility to be of service to others in service to others in

need.need.

African Americans: African Americans: Who are we?Who are we?

The term “African American” The term “African American” refers to people having origins refers to people having origins in any of the Black race groups in any of the Black race groups of Africa, as well as people of of Africa, as well as people of

African descent from Caribbean African descent from Caribbean Islands and parts of South Islands and parts of South

America. America.

Each of these groups has distinct Each of these groups has distinct cultural and social identities.cultural and social identities.


Today, African Americans represent Today, African Americans represent close to 13% of the population. close to 13% of the population. There are 2.7 million African There are 2.7 million African

Americans age 65 and over Americans age 65 and over By the year 2050, it is projected that By the year 2050, it is projected that

this number will increase to 8.6 this number will increase to 8.6 million.million.

Illness and SurvivalIllness and Survival

Many African Americans perceive Many African Americans perceive their success on the individual, their success on the individual, familial and cultural levels in familial and cultural levels in

terms of enduring a lifetime of terms of enduring a lifetime of oppressive and discriminatory oppressive and discriminatory

actions. In spite of these actions. In spite of these actions, African American actions, African American

elders passed on values, beliefs elders passed on values, beliefs and wisdom to their families.and wisdom to their families.

Illness and SurvivalIllness and Survival

Lives can be seen as Lives can be seen as successful, but it is believed successful, but it is believed

that the price of enduring that the price of enduring such pressure is such pressure is

experiencing mental and/or experiencing mental and/or physical health problemsphysical health problems..

Cultural Beliefs Associated with Cultural Beliefs Associated with Memory Loss and DementiaMemory Loss and Dementia

““Worration”Worration” Combination of worry and stress Combination of worry and stress

thought by many to cause damage to thought by many to cause damage to the brain. It is believed that one can the brain. It is believed that one can actually overuse one’s mind to the actually overuse one’s mind to the

detriment of the brain. That is, detriment of the brain. That is, “thinking too much” or “too much “thinking too much” or “too much

head work.”head work.”


Falling OutFalling Out

Presents as a loss of Presents as a loss of consciousness and a consciousness and a

physical collapse.physical collapse.


High BloodHigh BloodIs a condition in which the blood is not Is a condition in which the blood is not

flowing normally through the body.flowing normally through the body.

It is thicker or sweeter and therefore, It is thicker or sweeter and therefore, believed to be stagnating in the higher believed to be stagnating in the higher

area (head, chest) of the body. area (head, chest) of the body.

When the pressure of “too much blood” When the pressure of “too much blood” occurs you develop memory problemsoccurs you develop memory problems..

Culture, Memory Loss and Culture, Memory Loss and DementiaDementia

““I just thought it was a part of getting I just thought it was a part of getting older.”older.”

““She had suffered such a lifetime of worries She had suffered such a lifetime of worries and my father was not very good to her.” and my father was not very good to her.”

““My mom was the backbone of the family. My mom was the backbone of the family. Everyone looked up to her. She took on Everyone looked up to her. She took on everybody else’s problems. It was the everybody else’s problems. It was the pressure.” pressure.”

““STANDING IN THE GAPSTANDING IN THE GAP””What is senility?What is senility?

What is dementia?What is dementia?

What is Alzheimer’s diseaseWhat is Alzheimer’s disease??

What is Senility?What is Senility?

What is Senility?What is Senility?“Oh, she’s just senile”“Oh, she’s just senile”

Senility is not a medical term. Senility is not a medical term. Senile means “of, or relating to Senile means “of, or relating to advanced age.”advanced age.”

Senility does not refer to Senility does not refer to dementia.dementia.

Dementia is NOT normal aging.Dementia is NOT normal aging.

What is Dementia?What is Dementia?

Dementia is an umbrella term Dementia is an umbrella term that refers to a general loss that refers to a general loss of abilities involving memory of abilities involving memory and judgment, language and and judgment, language and abstract thinking as well as abstract thinking as well as

changes in personality.changes in personality.

Irreversible Causes of Irreversible Causes of DementiaDementia

Alzheimer’s diseaseAlzheimer’s disease Vascular dementiaVascular dementia Parkinson’s diseaseParkinson’s disease Huntington’s diseaseHuntington’s disease Pick’s diseasePick’s disease Creutzfeldt-Jakob diseaseCreutzfeldt-Jakob disease Lewy Body dementiaLewy Body dementia AIDS and at least 70 other conditionsAIDS and at least 70 other conditions

Alzheimer’s DiseaseAlzheimer’s Disease

Alzheimer’s disease is the most Alzheimer’s disease is the most common form of dementia. common form of dementia.

It occurs gradually over time as it It occurs gradually over time as it attacks the brain. attacks the brain.

The course of the disease can range The course of the disease can range from 8 years to as many as 20 years. from 8 years to as many as 20 years.

Alzheimer’s disease is irreversible.Alzheimer’s disease is irreversible.


Causes a steady decline in the Causes a steady decline in the ability to:ability to:

Remember and learnRemember and learnThink and reasonThink and reason

Communicate and respondCommunicate and respondLive independentlyLive independently

10 Warning Signs10 Warning Signs

Recent memory loss Recent memory loss that affects that affects performance at work performance at work or at homeor at home

Misplacing things Misplacing things Problems with Problems with

languagelanguage Confusion about time Confusion about time

and placeand place Poor or decreased Poor or decreased

judgmentjudgment

10 Warning Signs10 Warning Signs

Problems with Problems with abstract thinkingabstract thinking

Difficulty Difficulty performing familiar performing familiar taskstasks

Changes in mood Changes in mood or behavioror behavior

Changes in Changes in personalitypersonality

Loss of initiativeLoss of initiative


Risk Factors

Diabetes High BloodPressure

HighCholesterol Race???

Family History

Advanced Age

The Silent EpidemicThe Silent Epidemic

Alzheimer’s Alzheimer’s disease is more disease is more

prevalent among prevalent among African African

Americans than Americans than among whites – among whites – with estimates with estimates

ranging from 14 – ranging from 14 – 100 percent 100 percent

higher.higher.


There is a greater There is a greater familial risk of familial risk of Alzheimer’s in Alzheimer’s in African Americans.African Americans.

Genetic and Genetic and environmental environmental factors may work factors may work differently to differently to cause Alzheimer’s cause Alzheimer’s disease in African disease in African Americans.Americans.


A person with a history of either high A person with a history of either high blood pressure or high cholesterol is twice blood pressure or high cholesterol is twice as likely to develop Alzheimer’s disease.as likely to develop Alzheimer’s disease.

High blood pressure and high cholesterol High blood pressure and high cholesterol occur more frequently in African occur more frequently in African Americans.Americans.

African Americans have a 60 percent African Americans have a 60 percent higher risk of type 2 diabetes – a condition higher risk of type 2 diabetes – a condition that contributes to vascular disease.that contributes to vascular disease.

African Americans have a higher rate of African Americans have a higher rate of vascular dementia than whitevascular dementia than white AmericansAmericans..

Alzheimer’s Disease Stages - Alzheimer’s Disease Stages - MildMild

Can still take Can still take care of their care of their personal needs personal needs and may still be and may still be in the workforcein the workforce

Has trouble with Has trouble with finding names for finding names for common itemscommon items

Loses things Loses things more oftenmore often

May begin to ask May begin to ask the same question the same question over and overover and over

Gets lost easily in Gets lost easily in places well knownplaces well known

Personality Personality changes may changes may occuroccur

Loses interest in Loses interest in things once things once enjoyedenjoyed

Alzheimer’s Disease Stages - Alzheimer’s Disease Stages - ModerateModerate

Displays anxiety Displays anxiety or depressionor depression

Experiences Experiences difficulty with difficulty with simple activitiessimple activities

Paces excessivelyPaces excessively May hallucinate May hallucinate

or become or become paranoidparanoid

Requires close Requires close supervisionsupervision

Becomes more Becomes more confused about confused about recent eventsrecent events

Argues more than Argues more than usualusual

May wanderMay wander

Alzheimer’s Disease Stages - Alzheimer’s Disease Stages - SevereSevere

No longer able No longer able to communicateto communicate

Unable to Unable to recognize recognize themselves themselves when they look when they look into the mirrorinto the mirror

Can not care for Can not care for themselves themselves

Unable to Unable to recognize family recognize family membersmembers

May be bed-May be bed-bound and bound and become totally become totally debilitateddebilitated

Diagnosing Alzheimer’s Diagnosing Alzheimer’s DiseaseDisease

Physical Physical examinationexamination

Laboratory Laboratory teststests

Patient historyPatient history Memory and Memory and

thinking teststhinking tests


Patient history should include Patient history should include the following:the following:

Medical historyMedical history Focused historyFocused history Family historyFamily history

Social and cultural historySocial and cultural history


Medical History – Medical History –

Physicians should ask about Physicians should ask about relevant diseases: mental relevant diseases: mental

disorders, history of head trauma, disorders, history of head trauma, review information about review information about

infections or illnesses such as infections or illnesses such as pneumonia, diabetes, urinary tract pneumonia, diabetes, urinary tract infections or chronic renal failure.infections or chronic renal failure.

DiagnosingDiagnosingAlzheimer’s DiseaseAlzheimer’s Disease

Medical HistoryMedical History - -

The review of all medications is a The review of all medications is a criticalcritical component of the assessment because drug component of the assessment because drug

toxicity is the most common cause of dementia-toxicity is the most common cause of dementia-like symptoms that can be resolved.like symptoms that can be resolved.

A wide range of drugs have been associated with A wide range of drugs have been associated with cognitive changes. Patients should bring all cognitive changes. Patients should bring all

medications to the appointment including, over medications to the appointment including, over the counter pills.the counter pills.


Focused History – Focused History –

It must identify signs and symptoms It must identify signs and symptoms such as difficulty learning and such as difficulty learning and

retaining new information, retaining new information, handling complex tasks, reasoning handling complex tasks, reasoning

ability, spatial ability and ability, spatial ability and orientation, language and exhibits orientation, language and exhibits

behavior problems.behavior problems.


Family History – Family History –

Physician should inquire about a Physician should inquire about a family history of Alzheimer’s family history of Alzheimer’s

disease especially early onset disease especially early onset or other rare genetic conditions or other rare genetic conditions

that might lead to dementia.that might lead to dementia.

Diagnosing Alzheimer's Diagnosing Alzheimer's DiseaseDisease

Social and Cultural HistorySocial and Cultural History


Social and Cultural History –Social and Cultural History –

Include information about recent Include information about recent life events and social support life events and social support

networks, literacy, networks, literacy, socioeconomic, ethnic and socioeconomic, ethnic and cultural background. These cultural background. These

factors may affect performance factors may affect performance on mental status examinationson mental status examinations. .


Physical Examination – Physical Examination –

Standard medical principles should Standard medical principles should be used to guide a physical be used to guide a physical examination as a part of the examination as a part of the

assessment process.assessment process.


Mental Status Examination -Mental Status Examination -

Used to develop a picture along Used to develop a picture along with functional performance; with functional performance;

provides baseline data for provides baseline data for monitoring over time; and can monitoring over time; and can document multiple cognitive document multiple cognitive

impairments.impairments.


Mental Status Examination - Mental Status Examination -

Factors such as age, primary Factors such as age, primary language, educational level and language, educational level and

cultural influences should be cultural influences should be taken into consideration in the taken into consideration in the interpretation of mental status interpretation of mental status

scores.scores.


Laboratory TestsLaboratory Tests – –

Complete Blood Count (CBC), Complete Blood Count (CBC),

electrolyte panel, screening for metabolic electrolyte panel, screening for metabolic panel, panel,

thyroid gland function, B-12 and folate levels, thyroid gland function, B-12 and folate levels,

tests for syphilis and depending on history for tests for syphilis and depending on history for HIV antibodies, urinalysis, ECG, chest X-ray, HIV antibodies, urinalysis, ECG, chest X-ray,

CT and an EEG.CT and an EEG.

Diagnosing Alzheimer's Diagnosing Alzheimer's DiseaseDisease

African Americans African Americans tend to be tend to be

diagnosed at a diagnosed at a later stage of later stage of Alzheimer’s Alzheimer’s

disease – limiting disease – limiting the effectiveness the effectiveness

of treatments that of treatments that depend upon depend upon early action.early action.

The Importance of Early The Importance of Early DiagnosisDiagnosis

Early diagnosis may help the person Early diagnosis may help the person with dementia:with dementia:

Educate him/herself on the diseaseEducate him/herself on the disease Learn to manage the diseaseLearn to manage the disease

Participate in their own care planningParticipate in their own care planning Make legal and financial Make legal and financial

arrangementsarrangements

Disease ManagementDisease Management


Currently, there is no cure for the disease, Currently, there is no cure for the disease, but there are 5 drugs on the market that but there are 5 drugs on the market that may help reduce some of the symptoms may help reduce some of the symptoms associated with the disease. They are:associated with the disease. They are:

Cognex (tacrine) Cognex (tacrine) Aricept (donepezil) Aricept (donepezil)

Exelon (rivastigmine) Exelon (rivastigmine) Reminyl (galantamine)Reminyl (galantamine) Namenda (memantine)Namenda (memantine)


African Americans are seriously African Americans are seriously underrepresented in current clinical underrepresented in current clinical

trials of potential treatments for trials of potential treatments for Alzheimer’s disease.Alzheimer’s disease.

This has occurred even though evidence This has occurred even though evidence of genetic differences and response to of genetic differences and response to drugs varies significantly by race and drugs varies significantly by race and

ethnicity.ethnicity.


Physical exercise

Calm and well-structured environment

Proper nutrition

Pleasurable social activities

Adequate sleep

Identify what activities cause problem behaviors

Caring for the Person with Caring for the Person with DementiaDementia

The person with dementia is not:The person with dementia is not:Faking or trying to get on your Faking or trying to get on your

nervesnervesTrying to drive you crazyTrying to drive you crazySeeking attentionSeeking attentionThe recipient of a hex or a curseThe recipient of a hex or a curse

Caring for the Person with Caring for the Person with DementiaDementia

RememberRemember:: Difficult behaviors are the result of the Difficult behaviors are the result of the

diseasedisease Persons with dementia are not able to Persons with dementia are not able to learn new information or “just try a little learn new information or “just try a little

harder”harder” You, not they, will have to changeYou, not they, will have to change

Your relationship will changeYour relationship will change Denial, anger and depression are normal Denial, anger and depression are normal

reactionsreactions

Now, what do I doNow, what do I do??

Now, what do I do?Now, what do I do?The Lord never puts more on us than The Lord never puts more on us than

we can handlewe can handle Contact the local chapter of the Contact the local chapter of the

Alzheimer’s Association. Alzheimer’s Association.

““There is no time like the present”There is no time like the present” Learn more about the disease.Learn more about the disease.

““What you don’t know can hurt you”What you don’t know can hurt you” Talk to family members, friends or clergy.Talk to family members, friends or clergy.

““This is the first day of the rest of your life”This is the first day of the rest of your life” Take advantage of community resources. Take advantage of community resources.

““It is always darkest before the dawn”It is always darkest before the dawn”


The Alzheimer’s Association is the The Alzheimer’s Association is the largest national voluntary largest national voluntary organization dedicated to organization dedicated to

conquering Alzheimer’s disease conquering Alzheimer’s disease through research and to providing through research and to providing information and support to people information and support to people

with Alzheimer’s disease, their with Alzheimer’s disease, their families and caregivers.families and caregivers.

Core ServicesCore Services

Information and ReferralInformation and ReferralCare ConsultationCare Consultation

Educational ProgramsEducational ProgramsSupport GroupsSupport Groups

Alzheimer’s Association Safe Alzheimer’s Association Safe Return™Return™

Information and ReferralInformation and Referral

Information and Information and ReferralReferral

Information and Referral services Information and Referral services provide information about provide information about

Alzheimer’s disease, services Alzheimer’s disease, services provided by the chapter and provided by the chapter and

community resources. Service community resources. Service delivery may include Helplines, delivery may include Helplines, the Contact Center, information the Contact Center, information packets, Web sites or resource packets, Web sites or resource

libraries.libraries.

Care ConsultationCare Consultation

Assists the person with the disease Assists the person with the disease and/or their families by providing and/or their families by providing

information and making appropriate information and making appropriate referrals, supportive listening, referrals, supportive listening,

assessment of needs, developing an assessment of needs, developing an action plan or problem solving. This action plan or problem solving. This

can be done by telephone, e-mail or in can be done by telephone, e-mail or in person.person.

Educational ProgramsEducational Programs

Educational ProgramsEducational Programs

Provide individuals with knowledge Provide individuals with knowledge and skills necessary to enhance the and skills necessary to enhance the

quality of care for a person with quality of care for a person with dementia. May be carried out through dementia. May be carried out through

caregiver conferences, community caregiver conferences, community programs, in-service trainings for programs, in-service trainings for

professionals, newsletters or using professionals, newsletters or using videos.videos.

Support GroupsSupport Groups

Learning that you are not in this alone Learning that you are not in this alone can be beneficial. Supports groups are can be beneficial. Supports groups are

regularly scheduled in-person or regularly scheduled in-person or virtual gatherings of persons with virtual gatherings of persons with

Alzheimer’s disease, family, friends or Alzheimer’s disease, family, friends or caregivers who interact around issues caregivers who interact around issues

relating to Alzheimer’s disease. relating to Alzheimer’s disease. Groups have social, educational and/or Groups have social, educational and/or support components and are lead by a support components and are lead by a

trained individual.trained individual.

Support GroupsSupport Groups

Safe Return™Safe Return™

Is an identification program that assists in Is an identification program that assists in the safe and timely return of individuals the safe and timely return of individuals with Alzheimer’s disease who wander or with Alzheimer’s disease who wander or

become lost. become lost.

Safe Return provides family support, Safe Return provides family support, wandering awareness and ongoing wandering awareness and ongoing

education and training opportunities to education and training opportunities to emergency personnel as well as to the lay emergency personnel as well as to the lay

community.community.

What Can You Do?What Can You Do?

Become an advocate – Make your Become an advocate – Make your voice heard. You can make a voice heard. You can make a difference.difference.

Volunteer with the local chapter of Volunteer with the local chapter of the Alzheimer’s Association.the Alzheimer’s Association.

Help others learn about Alzheimer’s Help others learn about Alzheimer’s disease and available resources.disease and available resources.

Stand in the Gap!Stand in the Gap!

STANDING IN THE GAPSTANDING IN THE GAP……for you and your loved onesfor you and your loved ones

www.alz.org

1-800-272-39001-800-272-3900

an education and outreach program on memory loss, dementia and alzheimer’s disease for african...

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