1. Understanding Dementia
Colin MacDonald
Trainer in Dementia Care

2. Dementia: some important facts
An organic (physical) illness
Irreversible damage to brain cells
Progressive decline – ending in death
Affects approx. 750,000 people in UK
Prevalence increases with age (demographic changes)
More common in women
Increased prevalence in long term care settings
Major source of increased pressure and stress on carers and organisations
A person’s gender can have a bearing on their experience of and approach to pain. Under experimental circumstances women are shown to have a slightly “lower threshold, higher rating and less tolerance” (Berkley, 1997 p: 372) to pain than men. Women report more experiences of pain. This is in part due to differences in nerve structures (Hawkes 2000), which result in women experiencing increased levels of hyperalgesia* (Berkley 1997). Pain also interferes to a greater degree with the traditional tasks undertaken by women, for example housework (Oakley, 1974), and this extends into older age (Scudds and Østbye 2001). However, the research as a whole suggests that the differences are negligible and relate more to social and cultural factors.
Within most cultures women generally discuss pain more openly and seek assistance when needed (Berkley, 1997). Cultures in which strong male hegemonies exist show lower levels of pain reporting (Skevington 1995), though men have been shown to worry about the meaning of prolonged pain to a greater extent than women (Morin et al., 2000). Different cultures may use various forms of support to address pain. African-Americans have been found to use distraction and praying more than American Caucasians (Edwards et al., 2001) to support them through a physical pain experience. The individual’s historical or religious background can also significantly affect the response to pain (Skevington, 1995; Zborowski, 1952).
Particular concern has been raised about the level of discrimination that exists in care for people of different ethnicities in areas such as dementia care (Yeo et al., 1996) and studies have evidenced inequality in the treatment of pain for people from minority ethnic communities (Bonham, 2001; Todd et al., 1993). At a personal level, childhood victimization (Raphael et al., 2001) as well as a family history of pain (Fillingim et al., 2000) are associated with a higher reporting of physical pain.
* Referred sensation such as parasthesia like tingles, itch or numbness, changes in the perceived temperature of a body part or a feeling of pressure or constriction (Skevington, 1996)

3. Dementia is often associated with challenging behaviour
BUT it is NOT an inevitable
consequence of the disease
Process ! !

4. Dementia: its importance quantified?
In the United States it takes:
* 1,500 hours of training, passing a proficiency and written exam to get a license to be a Barber or Beautician;
* 400 hours of training, passing a proficiency and written exam to get a license to be a Dog Groomer;
* 75 hours of training, passing a proficiency and written exam to get a license to be a Paid Care Worker/Front-line Worker.

5. Changes to the brain memory thinking learning reasoning
Characterised by a decline in:
cognitive abilities
memory
thinking
learning
reasoning
emotional control
social behaviour
motivation

6. Vascular (Multi-Infarct)
Types of Dementia
CJD
Alzheimer’s
AIDs Related
Alcohol Related
Vascular (Multi-Infarct)
Dementia With Lewy Bodies DAT 50-60% VD 20-30, Mixed 10%
A significant number of people diagnosed with dementia are found to have tiny spherical structures called Lewy bodies in the nerve cells of their brains. It is thought these may contribute to the death of brain cells. Dementia is often mild at the outset and can be extremely variable from day to day. The symptoms are the fluctuation in the condition, visual hallucinations and extreme sensitivity to classical anti psychotic medications leading to marked symptoms of stiffness, tremor and restriction of movement. Dementia with Lewy bodies sometimes co-occurs with Alzheimer’s disease and Vascular dementia.
Alcohol Related Dementia: Korsakoff’s Syndrome
Too much alcohol, particularly if associated with a diet deficient in thiamine (Vitamin B1) can lead to irreversible brain damage. This dementia is preventable. If people don’t drink, or they drink at a safe level, they don’t get it. The most vulnerable parts of the brain are those used for memory, and for planning, organizing and judgement, social skills and balance. If drinking stops there may be some improvement. Taking thiamine appears to help prevent and improve the condition.
Frontal Lobe Dementia
e.g. Picks
Lewy Body's

7. Dementia – what it isn’t
Not the same as normal ageing
- some symptoms may be similar
- Not severe or progressive
- Do not normally die from normal ageing (esp < 10 years)
Confusion (acute confusional states or delirium)
Brain Damage (one-off)
Pychiatric illnesses

8. Understanding the Persons reality and experience
What is it like to have dementia?
Try to imagine the experience…
BUT CAN WE !!

9. Ref. The Last Escape. J. Nicol. Penguin
Whose experience?
“Throughout the ordeal you have to rely on your own strength of character. But the harsh reality is that control is out of your hands. You go from being confident to a terrified, lonely, simple human being at the mercy of others. Weeks are punctuated by isolation, fear, boredom, an awful, tragic, mind numbingly terrible time”
Ref. The Last Escape. J. Nicol. Penguin

10. The “Experience” of Dementia (from R
The “Experience” of Dementia (from R. Davis – “My Journey Through Alzheimers Disease).
“The blackness” – the sudden and devastating loss of memory “files”
“World closing in” – security and confidence
Coping with stress / agitation – physical exertion !!?
Others reaction to you –
- “the diagnosis”
- “secrecy and paranioa”
- “being talked over..”
- “childish/scornful reaction”

11. The experience of Dementia
Consider:
Trying to make sense of an increasingly unfamiliar world
Unable to make sense of the immediate environment
Unable to access areas of memory
Being disorientated – to time, place or person
Unable to respond to emotional demands as before
Being unable to verbally communicate your needs
Loss of “strengths” – “weaknesses” come to the fore
Loss of personal identity and control over your life
Being “ignored”, “talked over” or treated as “stupid”
Individual coping skills

12. Attitudes, views, and beliefs about older people
What about us?
An ageist society? Stereotypes?
Perceptions of behaviour
Negative and nihilistic views
Care models and approaches
Custodial and authoritarian attitudes
Inflexible routines and task orientated care
Focus on safety and physical care only
WILL ALL CONTRIBUTE TOWARDS BEHAVIOUR THAT WE
FIND CHALLENGING!

13. The disabling impact of the environment
Does it make sense to the person?
Lack of information
Reduced Visual Access
Lack of signs, cues and landmarks
Areas of importance not highlighted
Inappropriate lighting
Too much noise and conflicting stimuli
Patterned carpets and shiny flooring
Caution with mirrors

14. Reduce the impact of the environment
Good signage
Large size
Right height
Use of strong contrasts
Yellow highly visible
Symbol and text
On doors, not beside

15. Burnett Pollock Associates

16. Decoration
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18. Dementia as a disability is something that CAN be compensated for.
Final Point
Dementia as a disability is something that CAN be compensated for.
The person with dementia can’t adapt to us – we need to adapt our social and built environment around the person.

19. Thank You