1. Down Syndrome and Dementia

2. What is Dementia? Two main types: Multi infarct or vascular dementia
Alzheimer’s disease

3. Multi infarct dementia
Characterised by problems in the blood flow to areas of the brain
Typically caused by series of mini strokes and associated with hardening of the arteries
Second most common cause of dementia accounting for 25% of sufferers

4. Alzheimer’s Disease Caused by changes in the nerve cells of the brain
Plaques and neurofibrillary tangles develop
Interference to transmission between neuron to neuron and neurons and muscle

5. Alzheimer’s Disease
Is the biggest cause of dementia accounting for 50% of cases
Although people with Down Syndrome can develop Multi infract dementia, it is Alzheimer's that they are more susceptible to

6. Alzheimer’s Disease and Down Syndrome
Discovery of increased likelihood associated with greater life expectancy.
Presence of neurofibrillary tangles in almost every person with Down Syndrome by the age of 40.
Average of dementia onset is 54.2 years
Likely to be associated with Trisomy 21

7. Prevalence of AD in people with Down Syndrome
Age group 35-49: 8% develop AD
Age group 50-59: 55% develop AD
Age group 60 plus: 75% develop AD
Lai and Williams 1989

8. Alzheimer’s Disease – early stage
Loss of short term memory
Language problems – finding the right words
Performance on usual tasks deteriorates
Changes in behaviour
Disorientation

9. Alzheimer’s Disease- Mid stage
Symptoms become more obvious, particularly language skills
Disorientation (time, place, person)
Confusion resulting in frustration
Loss of self-care skills and continence
Long periods of apathy or inactivity
More severe changes in personality and social behaviour

10. Alzheimer’s Disease – Late stage
Loss of eating and drinking skills
Problems with mobility
Problems with recognising people
Incontinence
Development of seizures
Need often for 24 hour care
Increase in health problems such as pressure sores and infections

11. Communication – good practice
Keep environment calm and quiet
Approach from front and smile!
Monitor eye contact
Identify yourself and use their name
Make sure that you are seen before touch
Try to talk to the person on your own
Check if more receptive at particular times of the day

12. Communication good practice
Speak slowly and clearly
Keep language, responses and choices simple and concrete
Offer specific choices requiring ‘yes’ or ‘no’ answers
Use reminders/repetition
Allow people time to process information
Use visual aids

13. Communication – bad practice!
Distraction – television (pictures and sound); other people/interruptions
Long complicated sentences
Long notice before stressful events –anticipatory anxiety
Repeating yourself if misunderstood
Confrontational speech or body language

14. Principles of therapeutic environments
Predictable
Calm
Familiar
Appropriate level of stimulation
Structured
Adapted to the individual/makes sense to them

15. Therapeutic environment
Maintain daily routines, carrying them out at same times and places
Avoid unnecessary change
Use different spaces for different activities
Use music – calming not constant
Avoid excessive noise and commotion

16. Therapeutic environment
Build awareness of triggers for difficult behaviour or disorientation
Attention to colours to aid recognition – red orange yellow are more noticeable
Risk assessment for ‘wandering’
Use of visual cues
Monitor reaction to mirrors, reflections from pictures

17. Therapeutic Environments
Use of lighting to counteract ‘Sundowning’
Non glare lighting to minimise shadows
Give attention to colour of carpets and shiny floor surfaces.
Encourage failure free activities particularly in the mid stages of dementia

18. Therapeutic environments
Goal planning for specific skills
Capture current picture with regard to skills, hobbies and interests
Reminiscence
Music for relaxation and pleasure
Aromatherapy
Balance between stimulating and low arousal atmosphere

19. Types of challenging behaviour most associated with Down’s syndrome and dementia
Changeable moods_ Irritability Stubbornness Mood lability-laughter to tears Withdrawal Inappropriate responses to people or events

20. Possible solutions Look for specific triggers Maintain regular routine
Reassurance
Explain what is happening
Monitor mood, sleeping patterns, eating
Rule out other causes and treat where necessary
Distractions
Special care during personal care

21. Aggression/Unusual behaviours
Lashing out, verbal aggression Sexualised behaviour Screaming, shouting, crying, repetitious talk Storing , hoarding, throwing things away Inappropriate urination and defecation Resorting to the floor

22. Possible response/solutions
Reassure
Reduce demands
Breakdown tasks
Distraction with desired activities/redirect
Don’t approach quickly or from behind
Look for triggers
Pain or discomfort
Check previous history (interests/known helpful approaches/ history of abuse?)
Reduce possible irritants- alcohol; caffeine

23. Reasons for Wandering Disorientation Physical discomfort Boredom
Searching
Separation Anxiety
Reactivating previous activities
Night time wandering
Attention seeking/looking for help
Apparent aimlessness

24. Coping with challenges
Collecting data (ABC charts)
Establishing purpose/ function of behaviour
Monitoring / changing environment
Effective distracters
Monitoring own body language/ tone of voice/ use of personal space