Oct 11, 2017

Understanding Why “Alzheimer’s is a Journey, Not a Destination”

This is Part 3 of Leah Bisiani’s Understanding Dementia series – Read Part 1, Part 2


The only way to be absolutely sure that someone has A.D. is through brain autopsy after death.

However, there is criteria that can be met with specific symptomology allowing an 85-95% accurate diagnosis. (DSMV).

There is also a myriad of specific tests that allow excellent indicators to be compiled, that also can allow accurate identification of the probability of A.D

The diagnostic process:

How to conduct investigations with people living with dementia and their caregiver/family/friend:

  1. Ensure the purpose of all tests are well explained, step by step. Do not intimidate.
  2. Deliver the news in plain but sensitive language
  3. Testing can be very physically and emotionally draining, so provide the option of breaks and an opportunity toask questions.

General and expected initial investigations:

  • ?A complete history – physical, social, medical, life transitions ?
  • A neurological examination
  • ?Psychiatric screening
  • ?Social and behavioural evaluation
  • Assessment of functional ability/physical examination ?
  • Cognitive assessment/depression scale
  • Laboratory tests – FBE, hepatic and renal function, serum calcium, thyroid function syphilis serum, HIV, Vit.B12, urinalysis, ECG, CAT scan etc

When caring for any person living with dementia, we must remember that each person is totally unique, hence the severity and range of symptoms depends on many factors.

The most important area to appreciate is without doubt:

“Who is the person being cared for?”

We must know at least:

  • The cause, type and stage of dementia – there are over 170 irreversible types of dementia
  • Pre-existing lifestyle, life transitions and personality from birth
  • Environment and how it interrelates to a person’s choices and preferences
  • Social support
  • The presence of other medical conditions/acute conditions
  • The level of fatigue and stress/unfair expectations placed on the person/lowered stress threshold

The rights of people living with dementia must therefore be:

  • To be informed of one’s diagnosis
  • To have appropriate ongoing medical care
  • To be productive in work and play as long as possible
  • To be treated like an adult, not a child
  • To have expressed feelings taken seriously
  • To be free of psychotropic medications if possible
  • To life in a safe, structured, and predictable environment
  • To enjoy meaningful activities to fill each day

Alzheimer’s is a journey, not a destination

By challenging existing frameworks and becoming role models we can lead by example by:

  • Empowerment
  • Challenging the process
  • Inspiring and sharing vision
  • Enabling others to act
  • Modelling the way
  • Encouraging the heart

“For the person living with dementia, the most important moment is the present moment.

Tomorrow can scarcely be imagined or anticipated or understood.

Yesterday is, at best a dim recollection.

People with dementia live in the moment: life is most fully experienced in the now.

Our supreme challenge as caregivers is to embrace this attitude of living in the moment.

It is here we find the best opportunity to experience a measure of joy and fulfilment during this caregiving journey.”

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