Transcript How do you know you have dementia? Eileen and Dubhglas Taylor

Anosognosia: How do you know
when you have Dementia?
Eileen M Taylor and Dubhglas A Taylor
Alzheimer’s NZ Conference - 2016
How Do We know:
• "...because as we know, there are known knowns; there
are things we know we know.
• We also know there are known unknowns; that is to say
we know there are some things we do not know.
• But there are also unknown unknowns – the ones we
don't know we don't know... it is the latter category
that tend to be the difficult ones.“
– Said by Donald Rumsfeld United States Secretary of Defence In searching for weapons of mass
destruction in Iraq in 2002,.
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Background:
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NY Times columnist, Errol Morris, says when US President Woodrow
Wilson had a stroke in 1919, his physical impairments were minor, but his
mental health was different. Morris writes, “his close associates noticed a
change in his personality. He became increasingly suspicious, even
paranoid, without having the dimmest awareness of the fact that he was
perhaps becoming a different person.”
– Edwin Weinstein, neuro-psychiatrist reassessing Wilson’s case in the 1970s,
considered it a lack of awareness that one is impaired - a case of Anosognosia.
– In other words, he had no idea that he was also now a Person With Dementia.
– A challenge for HP's, family and friends and is a terrifying thought to consider.
“What if I were developing one of the many forms of dementia, and I didn't know
it? How would those who know me tell me?”
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What if they said, "Pardon me, your dementia is showing."
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How do you “Know” what you Know?
• The fabric and nature of reality has long been the subject of science, philosophy, media,
propaganda and entertainment.
• How do we know what we know?
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Language,
Authority,
Reason,
Sense perception,
Memory,
Insight,
Faith,
Intuition,
Imagination, and
Emotion.
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Example of Eileen’s Dad:
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In 1981 signs of memory loss affecting his day-to-day function;
Difficulty performing familiar tasks;
First noticed by Family and
Confusion about time and place;
Friends four (4) years before
Problems (money) with abstract thinking;
diagnosis.
Poor or decreased judgment;
Problems misplacing things;
These “signs” were pointed out to
Changes in personality or behaviour;
his doctor who stated he was “just
`
Loss of initiative.
a little eccentric!”
It then took
another Four
(4) years
before he was
Diagnosed!
He did NOT
Know there
was anything
wrong! EVER!
Cecil Morrison
1926 to 1994
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Facts:
• Currently, in Australia, symptoms of dementia were noticed by families an
average of 1.9 years prior to a GP assessment and an average of 3.1 years
before a firm diagnosis was made by a another professional.
– Alzheimer’s Australia Paper 24 – Phillips, Pond, and Goode, September 2011 Timely Diagnosis
of Dementia: Can we do better?
• Can we KNOW?
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How do you know Personally when you
have Dementia?
• For example, Often others (friends, family, colleagues), notice things in our
behaviour that may suggest we have a problem. BUT, they’re
uncomfortable telling us!
– Think about the concept of having – bad breath / poor body odour?
– What do you say?
• What about dementia?
• What if that person does not realize it?
– HOW do we tell them?
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Quite Often we only know when someone tells
us and even then, maybe NOT:
Feedback
Solicitation
Self
Disclosure /
Exposure
Known to
Others
Not Known to
Others
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Known to
Self
Not Known to
Self
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Open /
Public
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Blind
Spot
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Private
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Unknown
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Potential
area of
Defences
(Denial) or
Anosognosia
Insight /
Awareness
Johari
Window
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So, then...
•How can we “KNOW?”
Possible Ways of “Knowing!”
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(I) Personal Awareness that there
is something Wrong:
In 2009 I first became concerned when I could not recall words I know really
well related to my work as a personal counsellor. Also at that time I happened
to see a TV program about a Genetic Link. Hence I went to my GP and I had to
insist that I get a genes test. They found I have the RISK Gene – APOE
Gene.
• I then had to further insist to get a referral to a Neurologist for further
assessment;
• The Neurologist recommended I join a clinical treatment trial for AD that
I’ve now been on since 2009.
Still Eileen
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((II) Drop a Hint?:
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(II) Dropping a Hint?:
• Pretend that you have bad memory:
– A classic way to hint at a particular problem is to act as if you have the problem
yourself. This is a great way to bring up the topic of memory to someone, especially
to a person that you are not very close with, because it is a non-confrontational way
to make them think about their own memory. Start the conversation by saying:
• “I’m going to have to write that down, because I find it hard to remember
things.”
• “Is it just me, or do you have problems remembering things?”
• “Can you recall what we did yesterday? I feel like I just can’t remember
anymore.”
– If they still don’t get it, keep trying!
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(III) Being Direct:
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(III) Being Direct:
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Let them know gently.
– It is very important to understand that there is a difference between
being direct and being insensitive. When being direct, it is important to
avoid teasing, making any unkind comparisons like:
• “Your brain is like a sieve,” or “Do have a leaking bucket for a brain?”
• Some ideas for considerate, compassionate conversation starters include: “I
have noticed you sometimes feel confused and I’m not sure if you’re
aware, but your memory has not been too good lately."
• “Sorry to mention this, but you seem to be having some memory
problems right now is everything OK.”
• “If the situation was reversed I would want someone to tell me, so I
thought I’d let you know that you might want to have a chat with your
doctor about your memory”
– Example of Billy Connolly's diagnosis after a chance encounter with
a doctor in a hotel lobby in Australia who told him he was showing
symptoms of the incurable degenerative brain disease of Parkinson’s
Disease.
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(IV) Saying it Anonymously:
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(IV) Saying it Anonymously:
• Leave an anonymous note or item.
– This is the least confrontational option, and could also cause
the person to wonder about who sent the note in the first place.
– But maybe if you word the note kindly, the point will be made.
Just be sure to place the note (or books / brochures on
Dementia) somewhere where no one else could accidentally
come across it, as this will embarrass the person unnecessarily.
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(V) Ignoring it by saying / or doing
nothing:
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(V) Ignoring it saying / doing nothing –
is this a Question of:
• Anosognosia?
• Denial?
– A lack of awareness / insight of
impairment, not knowing that a
deficit or illness exists, in
memory or other function is
called anosognosia. The term
anosognosia refers to brain
cell changes that lead to a lack
of personal insight.
– The impairment may be in
memory, other thinking skills,
emotion, or movement.
– Anosognosia is not denial.
What you
don’t “Know”
CAN Hurt You!
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– Denial is a strategy used to
reject something that a person
wants to ignore, partially avoid,
or reject outright because it is
too difficult or causes too much
stress. The person may
minimize a problem or accept
part of the truth, for example,
the person may accept the fact
of being chronically ill but want
to avoid dealing with it by not
taking medicine. Sometimes a
person is in denial in order to
avoid taking any responsibility
for an issue or situation.
OR
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Things that further prevent KNOWING
(and Reaching a Diagnosis):
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Higher cognitive abilities – cognitive reserves (Swaffer and Low, 2016);
Family Shame / Stigma – example of Gene Wilder’s Family hiding his illness;
Fear of the unknown or consequences;
Health Practitioners (GP’s) – even then it’s a battle. Some doctors think there is “no
point” since there is little they can do (no “cure”), or afraid of damaging the
relationship with the patient, or fear the patient might self harm or neglect to inform
patients because they see their diagnosis as a death sentence;
Or, worse the GP engages in “Prescribed Disengagement,” coined by Kate
Swaffer and describing the process of assessment along with the process of
diagnosis – E.g. “Go home, give up work and study, set your affairs in order and
make end of life plans.”
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Example 1 of “Prescribed
Disengagement:”
– Sheila was diagnosed with Alzheimer’s disease two years ago when she was 49.
However, she first noticed something was amiss a few years before when she began to
struggle doing what she had done for many years such as sewing which she had been
particularly good at.
• She went to see a number of doctors at the end of 2015 who all told her that she was suffering
from depression and was prescribed antidepressants.
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So, how can one KNOW to gain a
Diagnosis:
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Patient / Partner / Family / Friends notice memory and / or personality
changes – Person with changes is referred to GP.
Process of Assessment:
YOD Diagnosis Guide
– Personal / Collateral History;
for Diagnosis:
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Physical Examination;
Cognitive Assessment;
Functional Assessment;
Check for Behavioural and Mood Symptoms;
Diagnostic Investigations;
Differential Diagnosis; and
Classification of Sub-Type.
Refer to Medical Specialists for further assessment (Neurologist; PsychGeriatrician; Geriatrician; Clinical Geneticist; Neuro-Psychologist).
Reassess 6-12 months later or PWD / Carer given diagnosis and referral
for support / help.
https://www.health.qld.gov.au/improvement/networks/docs/dementiayod-guide.pdf
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The Benefits of early diagnosis?
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It open the door to important information and resources;
Checking concerns (eliminating other possible causes);
Treatment (an early diagnosis means people can access medications, that though, not effective for
everyone have the greatest effect when taken early); and
Health Management (it means that families can plan ahead medically, financially, legally and
personally).
Beth Kallmyer, vice president of constituent services at the Alzheimer’s Association, likened the lack of
diagnosis to a cancer diagnosis in the 1950s or 1960s saying:
– “Cancer was called the ‘C-Word.’ It didn’t get talked about in doctors’ offices. It certainly wasn’t talked about in
the general public. That’s all changed now, and if you don’t remember that, you can’t even imagine how it was
back then, and it is that way now for Alzheimer’s disease – the “D-Word.” People are feeling like they can’t talk
about it, and we need to change that.”
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The Most Taboo Diagnosis?
• Of those people who had been treated for Alzheimer's, just 45% said they had been told by a
doctor that they had the disease.
• In contrast, 96% of people with breast cancer had been told their diagnosis.
• Even fewer people—just 27%—had been informed about other conditions that cause
dementia.
• The findings echo an earlier CDC report that discovered only 34.8% of adults over 65 with
Alzheimer's disease were aware of their diagnosis.
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Example 2 of “Prescribed
Disengagement:”
– Dennis was diagnosed with Alzheimer’s disease in 2014 when he was 59.
He noticed something was amiss when he found he couldn’t remember
his students’ names and was given a hard time by them.
• He went to see a doctor who treated him for stress and encouraged him to give up
teaching.
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NOT...
•Good enough!!!!!!!
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Alzheimer’s Summit 2016:
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In March of this year (2016), we attended an AA’s Summit in Canberra. In a “Think Tank,” the idea of
having routine screening tests was floated as a possible solution in the prevention and treatment of
Dementia.
From most of the Doctors present there, we received an emphatic “NO!”
The issues has been at least debated in the USA and the UK with mixed conclusions.
In our opinion, the reasons given against the idea do not hold water.
Surely, since we have Mammogram Testing for women, Prostrate Testing for men, WHY not Dementia
Testing for ALL?
Thankfully the UK is currently leading the way (once again) with a pilot project.
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NHS Health Check Dementia Pilot:
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Public Health Education (PHE) are working with the Alzheimer’s Society
and Alzheimer’s Research UK on a pilot project, to extend the mandatory
dementia component of the NHS Health Check to all 40-64 year olds with
the aim of reducing the number of people who develop dementia.
The pilot project was launched on August 16, 2016 to coincide with the
Department of Health (DH) Dementia Moment, and is running across 4
areas, Birmingham, Bury, Manchester City and Southampton City. GP
surgeries and community models will be used to deliver the Health Checks.
There are two key outcomes:
– Assessing the feasibility of extending the dementia risk reduction component of
the NHS Health Check to all ages; and
– Assessing whether, through the intervention there is increased awareness of
dementia risk reduction among people aged 40-64.
http://www.nhshealthcheck.nhs.uk/nhs-health-checke-bulletin-september-2016/front-page/nhs-healthcheck-dementia-pilot
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Why NOT...
•Australasia?
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References:
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http://www.aplaceformom.com/blog/3-4-14-anosognosia-and-alzheimers/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1071151/
https://www.nursingtimes.net/clinical-archive/neurology/should-dementia-patients-beinformed-about-their-diagnosis/199802.article
https://www.fightdementia.org.au/about-dementia-and-memory-loss/how-can-i-findout-more/informing-the-person-with-dementia
http://www.nhs.uk/conditions/dementia-guide/pages/worried-someone-hasdementia.aspx
http://newoldage.blogs.nytimes.com/2014/01/22/when-they-dont-know-they-areill/?_r=0
http://www.nhshealthcheck.nhs.uk/nhs-health-check-e-bulletin-september-2016/frontpage/nhs-health-check-dementia-pilot
https://www.health.qld.gov.au/cairns_hinterland/docs/gp-dementia-enablementguide.pdf
https://www.health.qld.gov.au/improvement/networks/docs/dementia-yod-guide.pdf
Alzheimer’s Australia Paper 24 – Phillips, Pond, and Goode, September 2011 Timely
Diagnosis of Dementia: Can we do better?
Bryden, C. and Minns, S. (2015). Before I forget. Sydney, NSW: Viking.
Swaffer, K. (2015). What the hell happened to my brain? Living beyond
dementia. London, UK: Jessica Kingsley Publishers.
Swaffer, K. and Low, L., (2016). Diagnosed with alzheimer’s or another dementia.
Sydney, NSW: New Holland Publishers P/L.
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Questions:
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