“ Getting to Know Me ”

1. “Getting to Know Me” Enhancing skills in the care of people with dementia

2. Programme • Session 1: • Dementia, an introduction • Session 2: • Principles of person centred dementia care • Session 3: • Communication • Session 4: • The hospital environment and its impact on people with dementia • Session 5: • Opportunities for meaningful occupation and valuing the expertise of friends and family • Session 6: • Understanding and responding to behaviours that challenge

3. DVD • The six sessions are accompanied by clips from two DVDs showing: • Ann and Mike who both have a diagnosis of dementia, and Brian who cared for his wife who had dementia. • Gary who has a diagnosis of dementia and carers Mandy, Carol and Heather. Dr Michael Woodward also describes dementia and ‘what is going on’

4. “Getting to Know Me” Enhancing Skills in the Care of People with Dementia Session 1 Dementia: an introduction 1.1

5. Aims: • To reflect on the lived experience of dementia • To be able to define what dementia is • To be aware of the main causes of dementia and the key features of these • To consider signs and detection/diagnosis of dementia 1.2

6. Imagine… • You are sat in unfamiliar clothing, beside a bed in a room with 3 other beds and lockers, you think it might be a hospital but it is strange and unfamiliar... • You cannot recall how you got here ... • You don’t know what is about to happen, but you have a sense of dread... • The smells, noises, sights and people – those who appear ill and those in uniform moving about with purpose – are all puzzling and unsettling... • You recognise no-one... • You are hungry and thirsty... • Occasionally, you summon the courage to call out to people who walk close by. Many ignore you, those who stop and speak to you talk quickly in a language you can make no sense of, and then they swiftly depart... • When you get up your movements are unexpectedly slow and laboured... • Finally, when you try to seek a way out of this strange and unfamiliar place, a person in a uniform prevents you leaving… 1.3

7. What will you be thinking...? • What will you be feeling...? • What will you want to happen/who will you want to see? • What might you do...? 1.4

8. Experience of dementia Peoples experience of dementia is also shaped by their personality, culture, education, faith etc.... 1.5

9. Who is affected? By 2020 four hundred thousand people in Australia will have dementia… 1.6

10. Facts and figures • Dementia is a National Health Priority • There are over 298,000 people in Australia with dementia • There will be over 900,000 with dementia by 2051 • The proportion of people with dementia doubles for every 5 year age group • Three in ten people over 85 have dementia • Women make up 62% of all people with dementia • Total direct health and aged care services expenditure on people with dementia was at least $4.9 billion in 2009-10. (Source: AIHW Dementia in Australia Cat. No. AGE70. Canberra: AIHW) 1.7

11. Guidelines for dementia diagnosis and management • Australian Guidelines for GP management of dementia have also been published: The Royal Australian College of General Practice (RACGP) Guidelines.1 • The RACGP guidelines encourage case finding but not screening, early intervention, ongoing management of dementia symptoms, and partnership with carers and other service providers. • The RACGP guidelines suggest that when dementia is suspected – whether as a result of a screening test or of family or patient concerns – the GP obtain a full clinical history, interview the patient and family together and separately, and ascertain the patient’s ability to undertake daily activities (e.g. bathing, dressing, managing finances). • 1 Care of patients with dementia in general practice guidelines can be accessed at: http//ww.racgp.org.au/Content/NavigationMenu/ClinicalResources/RACGPGuidelines/CareofPatientswithDementia/ 20060413dementiaguidelnes.pdf • (Phillips, Pond, Goode, “Timely Diagnosis of Dementia: Can we do better?” 2011) 1.8

12. Other issues for the GP to consider include safety associated with driving, medication compliance, legal capacity and legal matters (e.g. advance care directives, enduring guardianship and enduring power of attorney). • The recommendations reinforce that detection and diagnosis of early dementia is a lengthy, challenging process that usually involves third parties in the diagnostic process. • (Phillips, Pond, Goode, “Timely Diagnosis of Dementia: Can we do better?” 2011) 1.9

13. What is dementia? “Dementia describes a collection of symptoms that are caused by disorders affecting the brain. It is a progressive disease.  It is not one specific disease.  Dementia affects thinking, behaviour and the ability to perform everyday tasks.  Brain function is affected enough to interfere with the person’s normal social or working life” (Alzheimer’s Australia Victoria, 2012) 1.10

14. Alzheimer’s disease 76% Vascular dementia Other causes Dementia Lewy body dementia Fronto-temporal lobedemenitia Causes of dementia 10% 4% 5% 5% (AIHW 2012) 1.11

15. Alzheimer’s disease How it affects the brain: • Plaques and tangles • Depletion of important neuro-transmitter brain chemicals • Atrophy of affected regions of the brain • Gradual, persistent decline in cognitive functioning Difficulties experienced: • Gradual onset • Memory loss • Word finding difficulties • Recognition difficulties • Disorientation • Increasing problems with everyday tasks • Changes to mood • Other… 1.12

16. Vascular dementia How it affects the brain: • Disease to blood vessels depriving areas of the brain of oxygen • May arise from infarcts affecting larger vessels or from small vessels disease • Often co-exists with Alzheimer’s disease Difficulties experienced: • Onset can be abrupt • Step-like progression • Losses similar to Alzheimer’s but some abilities may remain intact • There may be more unpredictability re changeable mood and behaviour • People may have greater levels of self-awareness • Small vessel disease can affect walking 1.13

17. Lewy Body Dementia How it affects the brain: • Protein deposits occurring in nerve cells in areas of the brain • Accounts for about 4%* of all dementias in England • On the same spectrum to Parkinson’s disease with dementia (Alzheimer’s Society UK, 2007) Difficulties experienced: • Fluctuating episodes of lucidity and confusion • Auditory and visual hallucinations • Parkinsonian symptoms are likely • People are more prone to falls • Disturbed nights with nightmares and hallucinations may be present • Sensitivity to neuroleptic/anti-psychotic medications 1.14

18. Fronto-temporal dementia Includes: • Frontotemporal lobar degeneration (FTLD) or Behavioural Variant FTLD or Pick’s disease • Progressive non-fluent aphasia (PNFA) or primary progressive aphasia (PPA) • Semantic dementia (SD) How it affects the brain: • Damage to frontal and temporal lobes • Predominantly affects people under 65 • 30-50% of people may have a family history (Adapted from Rohrer et al PDSG, 2009) 1.15

19. Fronto-temporal dementia Difficluties experienced may include: • Apathy • Changes to personality • Obsessive compulsive behaviours • Disinhibition • Difficulties with language (PNFA) • Loss of knowledge of word meanings (SD) (Adapted from Rohrer et al PDSG, 2009) 1.16

20. Identifying dementia • Delirium (acute confusion) and depression are also common in older people. • A diagnosis of dementia should be made only after a comprehensive assessment, which should include: • history taking • cognitive and mental state examination • physical examination and other appropriate investigations including blood tests • a review of medication • Other tests may include: • Structural imaging – CT and MRI • Neuropsychological testing • People assessed for the possibility of dementia should be asked if they wish to know the diagnosis and with whom they wish the diagnosis to be shared (NICE/SCIE Dementia Guidelines) 1.17

21. Ann, Mike and Brian...refer to DVDs 1.18

22. References: • Alzheimer’s Australia Victoria • Alzhiemer’s Society Dementia UK • AIHW Dementia in Australia Cat. No. AGE70. Canberra:AIHW • NICE/SCIE Dementia Guidelines (2006) • Roherer, J & Warren, J. Frontotemporal dementia (on-line) http://pdsg.org.uk/clinical_information (Accessed on 22 March 2011) 1.19