Dementia Care & Support for People with Intellectual Disability Rachel Carling-Jenkins, PhD

1. Dementia Care & Support for People with Intellectual DisabilityRachel Carling-Jenkins, PhD • ACU / NDS Website Publication • Part 1: Introduction to Dementia Care & Support

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. Content within this presentation is based on research and study funded by: Acknowledgement to my colleagues: Professor Teresa Iacono; Professor Chris Bigby from LaTrobe University Dr Jenny Torrfrom CDDHV, Monash University

4. What is dementia? Dementia is the term used to describe the symptoms of a large group of illnesses which cause a progressive decline in a person’s functioning. It is a broad term used to describe a loss of memory, intellect, rationality, social skills and what would be considered normal emotional reactions. Source: Alzheimers.org.au

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

6. Forms of Dementia • Alzheimer’s disease (most common form) • Vascular dementia (second most common) • Alcohol related dementia • AIDS related dementia • Dementia with Lewy bodies • Fronto temporal lobar degeneration • Dementia related to other conditions such as Parkinson’s disease, Huntington’s disease and MS

7. What is Alzheimer’s disease? • The brain of someone with Alzheimer’s disease is degenerating

8. The brain & brain functions PARIETAL LOBE: Intellect, Thought Reasoning, Memory FRONTAL LOBE: Thought Reasoning Behaviour memory OCCIPITAL LOBE: Motor & sensory functions, speech (Left) Abstract Concepts (Right) Vision TEMPORAL LOBE: Behaviour Memory Hearing & vision pathways Emotion

9. Stages of Dementia:Each stage effects more and more brain function

10. A person with dementia is affected in the way they: INTERPRET INTERACT WITH RESPOND TO both social and physical environments

11. Alzheimer’s disease & Down syndrome • Link between early onset Alzheimer’s disease and Down syndrome: • Occurs in “middle” age (prior to 65) • Genetic component • Effects up to 75% of Down syndrome population • First generation living into older age

12. Dementia & Intellectual Disability Link between Alzheimer’s disease and people with other forms of Intellectual disability: • Not established • Similar numbers to the general population • Still a concern due to ageing population

13. Early Warning Signs In general population: • Deterioration in episodic memory . In people with Down syndrome: • Changes in personality & behaviour, • Decline in skills, • Onset or worsening of seizures.

14. The importance of a Medical Diagnosis • Never “self diagnosis” • Need to rule out treatable conditions • Alzheimer’s is a disease and needs to be managed as such • Early diagnosis = knowledge, access to support and information = higher quality of life for person you support • Ageing occurs more quickly in people with Down syndrome

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

16. For more information: Torr, J.; Rickards, L.; Iacono, T. & Winters, D. (2010). Down syndrome and Alzheimer's disease. Alzheimer’s Australia and Down Syndrome Victoria. PDF available for dowload: http://cddh.monash.org/assets/dsad-booklet-final.pdf

17. Please contact me directly for a confidential discussion on: • Consultation within your workplace • Staff training sessions • Family training sessions Dr Rachel Carling-Jenkins Research Fellow R.carling-jenkins@latrobe.edu.au rcarlingjenkins@gmail.com Phone; 0405 387 075