LIVING WITH DEMENTIA

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LIVING WITH DEMENTIA
Peter J S Ashley Council Member
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LIVING WITH DEMENTIA
Peter J S Ashley Member
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LIVING WITH DEMENTIA
Peter J S Ashley Member
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LIVING WITH DEMENTIA
A CASE STUDY
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LIVING WITH DEMENTIA

• Pre 1997 a Company Director, fit and a total
  workaholic.
• In February 1997 contracted Legionnaires Disease
  in the Dominican
• Republic.
• Repatriated to the UK where careful nursing
  resulted in a recovery
• (a close call).
• Chronic fatigue syndrome (ME) plus very serious
  depression.
• 2 seven week periods in mental hospital.
• 2 suicide attempts

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LIVING WITH DEMENTIA

• 7 sessions of Electro Convulsive Therapy (ECT).
• 2 heart attacks.
• 2 periods in General Hospital
• Investigative surgery to see if more complex
  heart surgery needed.
• Continuing Angina up to the present day.
• Diabetes diagnosed.

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LIVING WITH DEMENTIA

• Extensive drug therapy established.
• Continuing investigations into chronic
  depression.
• Every Psychiatric drug in the book tried to no
  avail.
• Referred to a Professor of Neurology who speedily
  organised
• Brain Scans MRI and SPECT
• EEGs
• Extensive Cognitive testing
• Physical ability testing, blood chemistry, etc..
• Within one month diagnosis.

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LIVING WITH DEMENTIA

• EARLY STAGE DEMENTIA.
• MOST LIKELY TO BE
• DEMENTIA WITH LEWY BODIES
• (DLB)

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LIVING WITH DEMENTIA

• How do I know all this?

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LIVING WITH DEMENTIA

• This is my story.
• I have Lewy Body Dementia
• Im the one who suffered all these traumas.

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LIVING WITH DEMENTIA

• THE DATE
• 20th JULY 2000
• D DAY

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LIVING WITH DEMENTIA

• Whilst the common words we hear are Alzheimers
  Disease
• The word DEMENTIA embraces all
• Alzheimers Disease
• Lewy Body Dementia
• Vascular Dementia
• Picks Disease
• CJD
• Etc..

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LIVING WITH DEMENTIA
4 2 2 3
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62
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LIVING WITH DEMENTIA

• We are the EXPERTS we see the
• world from the inside out, not the
• outside in.

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LIVING WITH DEMENTIA

• Its the Researchers and the Caring
• Community that see our world from
• the outside in.

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LIVING WITH DEMENTIA
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LIVING WITH DEMENTIA
TODAY 700,000 with late onset dementia. How
many with early to mild onset, like me? The same
number again or twice that number? In my view
the latter. 2.1 Million People with Dementia
more than 3 of the UK population. Frightening
isnt it
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LIVING WITH DEMENTIA

• WHAT ARE WE DOING ABOUT IT?
• The Alzheimers Society (Report Dementia UK)
• The Government (QOFs)
• DeNDRoN
• (Dementias and Neurodegenerative Diseases
  Research Network)
• The National Audit Office
• NICE and SCIE

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LIVING WITH DEMENTIA
WHATS NICE ABOUT NICE
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LIVING WITH DEMENTIA
This is the team. In alphabetical order.
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Dementia Guideline
November 2006
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Valid consent

• Health and social care practitioners should
  always seek valid consent from people with
  dementia.
• If the person lacks the capacity to make a
  decision, the provisions of the Mental Capacity
  Act 2005 must be followed.

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Carers

• The rights of carers to an assessment of needs as
  set out in the Carers (Equal Opportunities) Act
  2004 should be upheld.
• Carers of people with dementia who experience
  psychological distress and negative psychological
  impact should be offered psychological therapy,
  including cognitive behavioural therapy, by a
  specialist practitioner.

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Coordination and integration of health and social
care

• Health and social care managers should coordinate
  and integrate working across all agencies
  involved in the treatment and care of people with
  dementia and their carers.
• Care managers/coordinators should ensure the
  coordinated delivery of health and social care
  services for people with dementia.

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Memory services

• Memory assessment services should be the single
  point of referral for all people with a possible
  or suspected diagnosis of dementia.
• Services may be provided by a memory assessment
  clinic or by community mental health teams.

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Structural imaging for diagnosis

• Structural imaging should be used to assist in
  the diagnosis of dementia, to aid in the
  differentiation of type of dementia and to
  exclude other cerebral pathology.

Magnetic resonance imaging (MRI) is the
preferred modality to assist with early diagnosis
and detect subcortical vascular changes, although
computed tomography (CT) scanning could be used.
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Behaviour that challenges

• People with dementia who develop behaviour that
  challenges should be assessed at an early
  opportunity to establish the likely factors that
  may generate, aggravate or improve such
  behaviour.
• Common causes include depression, undetected pain
  or discomfort, side effects of medication and
  psychosocial factors.

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Training

• Health and social care managers should ensure
  that all staff working with older people in the
  health, social care and voluntary sectors
  haveaccess to dementia-care training that is
  consistent with their role and responsibilities.

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Mental health needs in acute hospitals

• Acute and general hospital trusts should plan and
  provide services that address the specific
  personal and social care needs and the mental and
  physical health of people with dementia who use
  acute hospital facilities for any reason.

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Interventions

• The guideline recommends a range of
  non-pharmacological and pharmacological
  interventions for cognitive symptoms,
  non-cognitive symptoms and behaviour that
  challenges, and for comorbid emotional disorders.
• It incorporates the recommendations of the
  Alzheimers technology appraisal.
• TA111

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LIVING WITH DEMENTIA

• How do people with early stage dementia differ
  from the rest of those who have this terrible
  family of disease?
• He are some of my views

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LIVING WITH DEMENTIA
DEMENTIA CONDITION
LOW
Late Stage Diagnosis
Early Stage Diagnosis
A
2
B
1
3
C
T
T
HIGH
0
TIME
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LIVING WITH DEMENTIA
DEMENTIA CONDITION
LOW
Early Stage Diagnosis
Late Stage Diagnosis
A
2
4
B
1
3
C
gt1.5T
T
T
HIGH
0
TIME
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LIVING WITH DEMENTIA

• What factors cause the changes seen in the last
  graph (Green line)?
• The first is the use of one of the four dementia
  drugs.
• The second, and just as important, is what I call
  MENTAL CALLISTHENICS. Exercising the brain.

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LIVING WITH DEMENTIA

• MENTAL CALLISTHENICS.
• Exercising the brain.
• Continuing to use your mental abilities to the
  full.
• Doing what Im doing now, presenting to the
  community and engaging in debate.
• Trying to keep pace with ones normal
  contemporaries.
• To draw a parallel if you want to keep your
  body fit you exercise it go to the Gym. if you
  want to keep your brain fit you exercise that as
  well.

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LIVING WITH DEMENTIA

• Recent Research suggests
• That people with high intellect and a higher than
  average IQ have a much better ability to sustain
  their quality of life if they continue to use
  their capabilities to the fullest extent.

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LIVING WITH DEMENTIA

• QUOTE..
• One likely explanation, (for prolonged
  intellectual preservation) many researchers
  believe, is that intelligence produces a
  "cognitive reserve" in the brain, helping people
  cope for longer with brain changes that would
  normally cause dementia. Whether this cognitive
  reserve is literally a collection of surplus
  brain cells or is the result of more efficient
  programming--perhaps derived from greater
  practice in using alternative brain networks for
  solving problems-remains unknown.
• ANON

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LIVING WITH DEMENTIA

• What about the rest of the community?

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LIVING WITH DEMENTIA

• THE PROFESSIONALS
• Those carrying out valuable work to improve the
  quality of our lives and ultimately discover the
  genesis of all Dementias

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LIVING WITH DEMENTIA

• THE PROFESSIONALS
• Have they got all the answers yet?
• Are the answer theyve got always right?
• Do they know what dementias really are?

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LIVING WITH DEMENTIA

• THE PROFESSIONALS
• Do they know why my apparent abilities have not
  got much worse, during the last year, whilst my
  motor functions have deteriorated quite
  seriously?

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LIVING WITH DEMENTIA

• THE CARERS
• We have a fantastic family of carers and care
  partners

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LIVING WITH DEMENTIA

• BUT WE MUST HAVE
• CARERS
• NOT
• KEEPERS

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LIVING WITH DEMENTIA

• ALL THIS EQUATES TO
• People with Dementia
• Carers
• Professionals
• SUCCESS

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LIVING WITH DEMENTIA

• People ask.
• Peter, how can you be so positive when you know
  the progression of your own disease and the
  trauma it will bring?
• I dont know, but I am!

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LIVING WITH DEMENTIA

• MY BELIEFS
• In my case, perhaps the most important.
• An adoption of the work ethic that drives me
  forward and allows me to use those talents that
  still remain.
• An ability to articulate and think logically
  about my condition.
• The retention of a sense of humour.

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LIVING WITH DEMENTIA

• PROBLEMS
• Memory functions poor to be expected.
• Hallucinations.
• Tremors Parkinson like symptoms.
• Poor Spatial Awareness.
• Dysgraphia and Dyslexia (Note Computer helps,
  although that has its own problems)
• Side issue Cardiac problems and Diabetes.
• Giving up driving.

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LIVING WITH DEMENTIA

• Dementia with Lewy Bodies carries with it the
  same lose of short term memory as do other
  dementias.
• To aid me minimise this problem I record every
  meeting, conference and major conversation that
  takes place.
• I have a massive library of recordings, fully
  indexed, to which I can always refer.
• In so many ways this even better than ones own
  memory as it is completely factual and verbatim
  of things in the past and a single recording can
  last for hours.
• Without my Olympus DS-50 none of this would be
  possible.
• THANKS OLYMPUS FOR PRODUCING SUCH AN EXCELLENT
  PRODUCT.

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BUT IN SPITE OF EVERYTHING WE MUST KEEP OUR
SENSE OF HUMOUR
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RETAINING A SENSE OF HUMOUR
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LIVING WITH DEMENTIA
IM
NOT
DYING FROM DEMENTIA
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LIVING WITH DEMENTIA