October 2012- Presentation PDF

Understanding the
Person with Dementia
Mary Burnett
CEO,
Alzheimer Societies of Brant,
Haldimand Norfolk, Hamilton Halton
October 2, 2012
Our Mission:
To alleviate the personal and social
consequences of Alzheimer’s disease
and related dementias.
Alzheimer Society Services
and Supports
• First LinkTM
• Education
• Support groups for persons diagnosed and for
their family and friends
• Community partnerships
• Professional consultation
• Library resources
• Respite programs
To begin…
What do you want to
know about Alzheimer’s
disease and related
dementias?
The Journey of Dementia
Aging
Is normal…it is not a disease
T F
Accelerates as we get older
T F
Begins at maturity (early 50’s for humans) T F
Varies in rate from person to person
T F
Occurs in all living things
T F
Adapted with permission from AREP
Normal Forgetfulness
• Recognize people & places, even if cannot
recall their names
• Remember the day & time
• Forget details of a recent experience,
but not the experience itself
• Forget items, but will often remember later
Acknowledgment to ASO Core Materials
Warning Signs
Memory loss - last things in first things lost
Difficulty performing familiar activities
Problems with language
Disorientation of time and place
Poor or decreased judgment
Warning Signs
Problems with abstract thinking
Misplacing things
Changes in mood
Changes in personality
Loss of initiation
What is Dementia?
A set of symptoms, which includes:
–loss of memory
–understanding
–judgment
Projected Prevalence of Alzheimer’s
disease and related dementia
300,000 Alzheimer’s Cases in 2000 > 750,000 Projected Within a
Generation
850
750
750
650
000’s
550
500
450
350
300
250
150
0
2000
2011
2031
Canadian Study of Health & Aging Working Group. CMAJ 1994; 150:899-913
Prevalence of ADRD in HNHB
LHIN
Over 25,000 people in HNHB LHIN (2011)
Approximately 50% of those with dementia
live in the community
Approximately 70% of individuals living in
long-term care homes have dementia
Getting a Diagnosis
It is important to understand that:
• There is no single test
• Getting a diagnosis is a lengthy
process that may involve:
- medical history
- mental status exam
- laboratory tests
- neuropsychological evaluations
- physical exam
“Reversible” Dementia
•
•
•
•
•
•
Depression
Delirium
Drugs
Nutritional Disorders
Metabolic Disorders
Infection
Dementia – not a disease, but a set of
symptoms that accompanies a disease
Alzheimer
Frontotemporal Vascular
Lewy Body
Mixed
**up to 50 different kinds of dementia
The “Big 5” Dementias
Lewy Body Dementia
Vascular Dementia
Mixed Dementia
Frontotemporal Dementia
Alzheimer’s Disease
Lewy Body Dementia
• May account for 5-10% (&
possibly as much as 25%) of
dementias
• Lewy bodies form within the
brain cells
• These protein substances are
distributed in various areas of
the brain
Lewy Body Dementia
Symptoms include:
 prominent fluctuations in
cognition and alertness

recurrent visual hallucinations
 spontaneous motor features
of parkinsonism
 memory can fluctuate day to
day
Progression of disease is usually
more rapid
Estelle Geddy (July 2008)
Vascular Dementia
• 15 – 30% of dementias
• Occurs in men>women
• Result of a single or multiple
strokes
• Progresses in step-wise pattern
Vascular Dementia
Memory impairment is NOT always
a primary feature and cognitive
impairment may be variable
– Confusion/memory loss (hippocampus)
– Abnormal
movements/gait/coordinationcerebellum (frontal lobe)
– Language problems (frontal, temporal)
– Inappropriate emotions (frontal)
Mixed Dementia
• Most commonly a diagnosis of both
Alzheimer’s Disease and Vascular
Dementia, but can refer to AD +
another form of dementia
• Becoming more recognized
• Presents very much like AD
Frontotemporal Dementia
• 2-3% of dementias
• Symptoms begin gradually,
progress slowly
• Average age of onset is 57
• Behavioural disorder (Pick’s)
– behavioural changes are 1st sign
• Language disorder
– Semantic Dementia
– Progressive Non-Fluent Aphasia
Less common types of dementia
Alcohol Dementia
(Korsakoff’s syndrome )
Huntington’s Disease
Creutzfeldt Jakob Disease
AIDS Dementia Complex
Alzheimer’s Disease
• Most common form of dementia
(64%)
• 1901- 06 - treated 51 year old
woman with dementia symptoms
• He is credited as diagnosing the
relationship of physical damage to
brain (plaques and tangles) to the
symptoms of dementia
Alzheimer’s Disease
– abnormal build-up of
plaques and tangles chemicals in and around
brain cells
-disrupts neurons from
functioning and they
eventually are unable to
survive
Alzheimer's Disease
damage from the disease increases over time
brain cells degenerate or break down
damage cannot be repaired;
at present there is no known cure
It is NOT a normal part of aging
Alzheimer’s Disease:
The development of multiple cognitive deficits
manifested by:
Memory impairment - impaired ability to learn new information
or to recall previously learned information
+
One (or more) of the following cognitive disturbances:
– loss of language abilities
– loss of ability to initiate purposeful movements
– loss of recognition of sensory information
– disturbance in executive functioning
(“POSA” – planning, organizing, sequencing, abstracting)
Early Stage
Cognitive changes:
• Short-term memory loss
• Difficulty concentrating
• Trouble following directions
• Unable to find right words
Early Stage
Personality changes:
• Less sparkle, spontaneity,
ambition
• Appears indifferent,
decreased interest
• Withdrawal from usual
activities
Early Stage
Functional Changes:
• What is happening to me?
• Getting lost
• Appears vague, uncertain,
hesitant to initiate activities
• Forgetfulness disruptive to
formal routines
Middle Stage
Cognitive changes:
•  Memory and retention of new
information
•  Recall, calculations,
decision-making, planning
•  Memory of personal history
Middle Stage
• Personality changes:
•  appearance of self-interest
•  confusion, anxiety, mood
changes, suspiciousness
•
Insight- “nothing is wrong”
Middle Stage
Functional changes:
•  ability to initiate & sequence
• Visual spatial problems
• Potential to get lost
• Sleep disturbance
Late Stage
Cognitive changes
Personality changes
Functional changes
End-of-Life
Cognitive changes
Personality changes
Functional changes
Requires total care
Range of symptoms depends on:
•
•
•
•
•
•
Type of dementia
Stage of the disease
Area(s) of the brain affected
Environmental and social supports
Presence of other diseases or infection
Level of stress
Risk Factors
Age
Genes
Gender
risk 
Age
• 500,000 Canadians (2011)
• 71,000 of these Canadians
are under age 65
• 2% age 65 - 74
• 12% age 75 - 84
• 35% age > 85
• 58% age > 95
risk 
Gender
• More women than men
have Alzheimer’s disease
• Women account for over
2/3 of all those over 65
with the disease
• Women live longer than
men
risk 
Genetics
Two forms of Alzheimer’s disease:
– Sporadic (90-95% of cases)
– Familial (5-10% of cases)
Age
Genes
Gender
Risk Factors
The Importance of Understanding
When Alzheimer’s disease or related
dementia is present, changes in the
brain influence behaviour.
If you can understand what the person
is going through, it will make it easier
for you to realize why they behave in
certain ways.
The Importance of Understanding
All behaviour has meaning
The person has a reason for doing what they are
doing
The person is not intentionally trying to be
difficult
“Only after I understand the reason behind the
behaviour can I meaningfully respond to the
behaviour”
So … what might it feel like
to have dementia?
The diagnosis
• Think about it for a minute …
• We know and understand the diagnosis BUT do we
know and understand the person’s feelings about the
diagnosis? What is their lived experience like?
• It is better to know the kind of person that has the
diagnosis than to know the kind of diagnosis that the
person has
Wm Osler
Coming to terms with the
diagnosis
• Persons with the disease and their
families often experience a degree of
denial
• Denial is not altogether a poor coping
strategy – sometimes it affords a
valuable reprieve from the grave reality
of one’s circumstances
Snyder, L (2001)
Coping through denial
• “A degree of denial is essential. Like
somebody drinking hot coffee, we sip
the truth of our condition carefully and
gently.”
James, person with Alzheimer
“My Journey into Alzheimer’s”
Robert Davis
• “I live with the imminent dread that one
mistake in my daily life will mean
another freedom will be taken from me”
Anticipation of the Future
• “I’m almost 71 and I’m not amazed that
people die. So it isn’t the death. It’s the
loss of oneself while you are still alive.”
Speaking Our Minds
Lisa Snyder 1999
Feeling paranoia
• “ … The feeling of being put on and the
feeling nobody loves us, I think those
are perfectly normal feelings … I think
for a lot of us the feeling of being
cheated, or the feeling of being belittled
and somehow make jokes of, I think
that’s the worst things about
Alzheimer’s”
Henderson (1998)
Feelings of anger, irritability
and exasperation
• “I want to shout. I want to raise hell. I
want to be somebody I’m not.”
Henderson (1998)
• Sometimes tempers explode because of
the enormous energy expended just to
complete basic tasks
Snyder (2001)
Feelings of depression &
despondency
• Many persons with dementia experience
symptoms of depression, including;
– Sadness
– Hopelessness
– Adhedonia (decreased pleasure in normally
enjoyable activities)
– Sleep disturbance
– Changes in eating habits
Snyder (2001)
Barriers to Communication
• Verbal communication is an incredibly
important part of our interpersonal
relationships
• For the person with dementia the ability
to express and understand language is
profoundly affected over the course of
the disease
• What impact might this have on the
“lived experience”?
Snyder (2001)
Changes in Self Esteem /
Self Concept
• How would you respond if someone asked you “Who
are you?”?
• How would your sense of self change if you had
dementia?
• “I still would like to be treated like a person, you
know, because I’m still a person whether I do it wrong
or right … I want to feel like somebody, too, worth
somebody because a lot of times with this – already
with what I have … I really don’t belong any place.”
Family and Social
Relationships
• Recurrent themes
– Fear or recognition of becoming a burden
– Role changes
– Loss of autonomy
– Mutual adjustments
– Family as survival
Snyder (2001)
Meaningful Activities
• Many occupational and recreational
therapists are redefining “activities” to
acknowledge that basic activities of daily
living and everyday events or encounters
can be in the realm of meaningful
activity when attended to with
encouragement and creativity
• “Life does not end when a doctor says
you have Alzheimer’s – it goes on. You
enjoy what you can when you can …”
Brennan (1996)
Snyder (2001)
The Value of
Humor and Hope
• Humor can be a collective bond that
unites people in a shared experience
• Hope is “possibilities in the midst of
limitations”
Snyder (2001)
Hope and Dementia Care
• Making assumptions closes the door on
hope
• Asking questions opens the door to
hope
• Try to see things in a new way – jump
outside of the box
Let’s think about someone you
know who has dementia…
• How would you describe their “lived
experience” with dementia?
• What could you do to make that
experience better?
• Name three things that you will change
in your practice after today’s workshop
Still travelling our journey…
…but from a different place
Questions?
Thank you!
References
• Murray Alzheimer Research & Education
Program
• Role of Caring slides– adapted from
presentation created by Paula Frappier, Sheli
O’Connor, Robin Smart, Tricia Stiles, Cathy
Sturdy – Smith