Transcript Black/African American Communities: Standing in the Gap

“STANDING IN THE GAP”
An education and outreach program on memory loss,
dementia and
Alzheimer’s disease for African Americans
“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.
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.
African Americans:
Who are we?
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

By the year 2050, it is projected that this
number will increase to 8.6 million.
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.
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.
Cultural Beliefs Associated with
Memory Loss and Dementia
“Worration”
Combination of worry and stress 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 Beliefs Associated with
Memory Loss and Dementia
Falling Out
Presents as a loss of consciousness
and a physical collapse.
Cultural Beliefs Associated with
Memory Loss and Dementia
High Blood
Is 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.
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.”
“STANDING IN THE GAP”
 What
is senility?
 What
is dementia?
 What
is Alzheimer’s disease?
What is Senility?
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.
What is Dementia?
Dementia is an umbrella term that refers
to a general loss of abilities involving
memory and judgment, language and
abstract thinking as well as changes in
personality.
Irreversible Causes of Dementia
Alzheimer’s disease
 Vascular dementia
 Parkinson’s disease
 Huntington’s disease
 Pick’s disease
 Creutzfeldt-Jakob disease
 Lewy Body dementia
 AIDS and at least 70 other conditions

Alzheimer’s Disease
Alzheimer’s disease is the most common form
of dementia.
 It occurs gradually over time as it attacks the
brain.
 The course of the disease can range from 8
years to as many as 20 years.
 Alzheimer’s disease is irreversible.

Alzheimer’s Disease
Causes a steady decline in the ability to:

Remember and learn


Think and reason
Communicate and respond

Live independently
10 Warning Signs

Recent memory loss that
affects performance at
work or at home

Misplacing things

Problems with language

Confusion about time
and place

Poor or decreased
judgment
10 Warning Signs





Problems with abstract
thinking
Difficulty performing
familiar tasks
Changes in mood or
behavior
Changes in personality
Loss of initiative
Alzheimer’s Disease
Risk
Factors
Diabetes
High Blood
Pressure
High
Cholesterol
Race???
Family
History
Advanced
Age
The Silent Epidemic
Alzheimer’s disease is
more prevalent
among African
Americans than
among whites – with
estimates ranging
from 14 – 100 percent
higher.
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.
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.
High blood pressure and high cholesterol occur
more frequently in African Americans.
African Americans have a 60 percent 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.
Alzheimer’s Disease Stages - Mild



Can still take care of
their personal needs
and may still be in the
workforce
Has trouble with
finding names for
common items
Loses things more often




May begin to ask the
same question over and
over
Gets lost easily in
places well known
Personality changes
may occur
Loses interest in things
once enjoyed
Alzheimer’s Disease Stages Moderate

Displays anxiety or
depression

Requires close
supervision

Experiences difficulty
with simple activities


Paces excessively
Becomes more
confused about recent
events

May hallucinate or
become paranoid

Argues more than
usual

May wander
Alzheimer’s Disease Stages - Severe

No longer able to
communicate

Can not care for
themselves

Unable to recognize
themselves when they
look into the mirror

Unable to recognize
family members

May be bed-bound
and become totally
debilitated
Diagnosing Alzheimer’s Disease

Physical
examination

Laboratory tests

Patient history

Memory and thinking
tests
Diagnosing Alzheimer’s Disease
Patient history should include the following:
 Medical history
 Focused history
 Family history
 Social and cultural history
Diagnosing Alzheimer’s Disease
Medical History –
Physicians should ask about relevant
diseases: mental disorders, history of head
trauma, review information about
infections or illnesses such as pneumonia,
diabetes, urinary tract infections or
chronic renal failure.
Diagnosing
Alzheimer’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-like symptoms 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.
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.
Diagnosing Alzheimer’s Disease
Family History –
Physician should inquire about a family
history of Alzheimer’s disease especially
early onset or other rare genetic
conditions that might lead to dementia.
Diagnosing Alzheimer's Disease
Social and Cultural History
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.
Diagnosing Alzheimer’s Disease
Physical Examination –
Standard medical principles should be used
to guide a physical examination as a part
of the assessment process.
Diagnosing Alzheimer’s Disease
Mental Status Examination Used to develop a picture along with
functional performance; provides baseline
data for monitoring over time; and can
document multiple cognitive impairments.
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.
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 HIV
antibodies, urinalysis, ECG, chest X-ray, CT
and an EEG.
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
action.
The Importance of Early Diagnosis
Early diagnosis may help the person with
dementia:
 Educate
him/herself on the disease
 Learn
to manage the disease
 Participate in
 Make
their own care planning
legal and financial arrangements
Disease Management
Disease Management
Currently, there is no cure for the disease, but there are 5
drugs on the market that may help reduce some of the
symptoms associated with the disease. They are:



Cognex (tacrine)
Aricept (donepezil)
Exelon (rivastigmine)

Reminyl (galantamine)

Namenda (memantine)
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.
Disease Management
Physical
exercise
Calm
and well-structured
environment
Proper nutrition
Pleasurable
Adequate
Identify
social activities
sleep
what activities cause
problem behaviors
Caring for the Person with Dementia
The person with dementia is not:

Faking or trying to get on your nerves

Trying to drive you crazy

Seeking attention

The recipient of a hex or a curse
Caring for the Person with Dementia
Remember:
 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 change
 Your relationship will change
 Denial, anger and depression are normal
reactions
Now, what do I do?
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”

“STANDING IN THE GAP”
The Alzheimer’s Association is the largest
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.
Core Services
Information
Care
and Referral
Consultation
Educational Programs
Support Groups
Alzheimer’s Association
Safe Return™
Information and Referral
Information and Referral
Information and Referral services provide
information about Alzheimer’s disease,
services provided by the chapter and
community resources. Service delivery
may include Helplines, the Contact
Center, information packets, Web sites or
resource libraries.
Care Consultation
Assists 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.
Educational Programs
Educational Programs
Provide 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.
Support Groups
Learning that you are not in this alone can be
beneficial. Supports groups are regularly
scheduled in-person or virtual gatherings of
persons with Alzheimer’s disease, family,
friends or caregivers who interact around issues
relating to Alzheimer’s disease. Groups have
social, educational and/or support components
and are lead by a trained individual.
Support Groups
Safe Return™
Is an identification program that assists in the safe and
timely return of individuals with Alzheimer’s disease
who wander or become lost.
Safe Return provides family support, wandering
awareness and ongoing education and training
opportunities to emergency personnel as well as to the
lay community.
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!
STANDING IN THE GAP…
for you and your loved ones
www.alz.org
1-800-272-3900