Dementia Care & Support for People with Intellectual Disability

1. Dementia Care & Support for People with Intellectual Disability

2. A little about me… Rachel Carling-Jenkins, PhD Research Fellow: Intellectual Disability Research Group LaTrobe University r.carling-jenkins@latrobe.edu.au Worked with people with Intellectual Disability and Dementia of the Alzheimer’s type Worked in Group Homes & Community Access programs PhD, Department Social Work & Community Welfare in disability rights

3. What is dementia? Dementia is a broad term used to describe a large group of illnesses that cause a progressive decline in a person’s functioning, including loss of memory and the ability to reason and learn Alzheimer’s disease is the most common form of dementia. Other forms: vascular dementia; alcohol related dementia; frontal lobe dementia; lewy body; (related to) pick’s disease parkinson’s disease, Huntington’s disease or MS; etc

4. Three elements common to all forms of dementia: Progressive Terminal Incurable

6. What else could it be? Lack of sleep UTIs Side effects of medications Thyroid problems Untreated pain Dehydration Constipation Menopause

7. What is Alzheimer’s disease?

8. The Brain & Alzheimer’s Disease Early Stage Middle Stage Late Stage

9. 2 Laws of Dementia

10. 1st Law of Dementia:The Law of Disturbed Encoding A person with dementia can no longer successfully transfer information from their short term memory into their long term memory

11. Person with Dementia New memories in – sorter can’t cope

12. Person without Dementia New memories in – stored efficiently

13. 2nd Law of Dementia: Roll Back Memory When a person first develops dementia, long term memories stay in tact, however as dementia progresses, long term memories will begin to deteriorate (roll back) and eventually disappear altogether

14. Supporting Derek:The Reality of Living with Dementia

15. Dementia can be very frustrating, lonely & confusing • What is going on for Derek? • What do you think Derek’s Direct Support Worker could have done better? • Can you recognise either of the Laws of Dementia?

16. How can we effectively support and care for someone who has both an intellectual disability and dementia?

17. Supporting a person with Intellectual disability & dementia involves:Putting the “dementia” puzzle pieces together The Puzzle of the Past & The Puzzle of the Present

18. The Puzzle of the Past Explore History to understand the present • Reminiscence Support Strategies: • Life story work • Rummage box • Activity aprons

19. Rachel’s Rummage Box

20. The Puzzle of the Present A different reality: Does it really matter? Prompt without frustration Plan tasks and activities Prepare the environment Play along with reality and have fun

21. What does a dementia friendly environment look like?

22. 1. Calm Calm Vs. Noisy & or cluttered

23. 2. Predictable GO TO BED Know what to expect Vs Mixed messages

24. 3. Easy to Interpret Understandable Vs Confusing

25. How do I wipe my hands?

26. 4. Homely Homelike Vs Workplace / clinical

27. 5. Safe Safe Vs. Unsafe

28. Play The role of staff Celebrate what the person can do Don’t ask questions Don’t argue or contradict a person who is living in a different reality Ask yourself, does it really matter?

29. Thank You Dr Rachel Carling-Jenkins Research Fellow R.carling-jenkins@latrobe.edu.au Phone; 0405 387 075