How clinical and social information can be useful

1. Clinical and social information can be useful in providing pastoral care to older people with dementia and their families. Rosemary Kelleher, Social Worker Honorary Fellow, Pastoral Care Department, St. Vincent’s Hospital Honorary Fellow, Academic Unit for Psychiatry of Old Age, The University of Melbourne Co-ordinator, The Pastoral Care Project

2. How clinical and social information canbe useful • To know the journey of the person with dementia • To know the journey of family and friends who care for the person with dementia • To develop strategies around the communication barriers • To take our place with confidence in settings which care for people with dementia and their families

3. What is dementia? Symptoms of dementia are not a normal part of ageing. Dementia is a syndrome or set of symptoms associated with a range of diseases characterised by impaired brain function including: • Language • Memory • Perception • Personality • Cognitive (thinking) skills Groups of symptoms experienced by people with a range of dementing illnesses. One person may have more than one condition Condition may be Mild Moderate Severe • Source: Dementia in Australia. National Data Analysis and Development. Jan 2007. Aust Inst. Health &Welfare Canberra

4. What is cognition? • -initiating activities • calculating • being organised • controlling impulses • learning new information and skills • making judgments • responding to unexpected events • having insight into abilities and limitations.

5. Some statistics • For people aged 65+ years, likelihood of developing dementias doubles every five years • 25% of people over 85 have dementia • 50% people consulting the Aged Care Assessment Team/using Care Packages (CACPs etc) are aged 75+ • 175,000 Australians had dementing illnesses in 2003 • 37,000 new cases diagnosed every year • Source: Henderson&Jorm 1998 Dementia in Australia- Aged and Community Care Development Report no 35 Dementia in Australia. National Data Analysis and Development. Jan 2007. Aust Inst. Health &Welfare Canberra

6. Some common forms of Dementia1: Dementia of theAlzheimer’s Type Characteristics: Gradual loss of functioning across at least three domains, over a period of at least twelve months, with other possible causes excluded Symptoms may include: • Eg: Word finding difficulty • Amnesia- Forgetfulness, especially short term memory • Apraxia- loss of ability in every day tasks, use everyday tools • Repeated questioning- forgetting previous enquiry and answer • Loosing the car keys/glasses • Not keeping appointments • Agnosia-Not recognising people and objects

7. Some common forms of Dementia2: Vascular Dementia Characteristics : • Step-wise deterioration of specific abilities • Changes occur following cerebral events such as stroke or an accumulation of transient aschemic attacks Symptoms may include: Eg: Loss of power of speech • Loss of ability to recognise another person ro show recognition • Loss of ability to move body parts, esp. down one side • Loss of awareness of specific body parts eg arm, leg, field of vision Example-playing drafts and ignoring some draft pieces.

8. Some common forms of Dementia3:Dementia of Lewy Bodies Type Characteristics: Gradual loss of capacities Symptoms may include: • Fluctuating alertness • Impaired spatial awareness • Hallucinations • Example

9. Some common forms of Dementia4: Fronto-temporal Lobar Degeneration (FTLD) Characteristics vary according to the cause of the degeneration Common symptoms include: • Impulsivity • Emotional outbursts • Difficulty initiating/organising activities

10. Behavioural and Psychological Symptoms of Dementia“BPSD” • Any of these illnesses may give rise to behavioral and psychological symptoms requiring specialised management • The accepted approach is to carefully study and document the difficulties, identify triggers of behavior and develop non-pharmaceutical strategies to assist wherever possible. • Regional Aged Mental Health Services can assist. –may have a library of diversional resources to use in care plan. • Dementia Behavior Management Advisory Service (DBMAS) provides consultation.

11. Diagnostic Process for Dementias • Examination for other known causes of presenting symptoms including infection, delirium, depression, • Blood screening eg for thyroid deficiency, infection, other illnesses • Neuro-imaging- CT scans, MRI or SPECT scans • Neuropsychological testing if required • Examination by specialist geriatrician eg at CDAMS Clinic (Cognitive Dementia and Memory Service- one in every public health region in Victoria) • CDAMS Clinic assessment should include home visit to see person in own environment in which they would be most comfortable and confident, and to understand the supports available or needed.

12. Validity of Dementia Screening Tests • Standardised against normal population of the same age • Given in short sessions to minimise fatigue and anxiety which may affect performance • Interpreter/ translated testing tools used • Scores adjusted in view of educational levels attained • Sometimes test-re-test schedule is used- the patient is only compared with his or her own previous performance.

13. Brain diagram

14. Occupational Therapy Assessments • Standardised against normal population of the same age • Will reflect in real life situations the capacities assessed in abstract by neuropsychology tests and possibly neuro-imaging, depending on condition causing impairment • Examples: • Impulsivity in neuropsychology test and driving test. • Calculations in neuropsychologytests and in making purchase in a shop, checking correct change • Executive function- being organised, making a cup of tea.

15. Mild Cognitive Impairment is Not Dementia • Older person or family may report symptoms of cognitive impairment but • Attain a normal score on Folstein Minimental State Examination (MMSE 30/30) • May be referred for further tests, esp neuropsychology • Do not receive a diagnosis of a dementing illness at CDAMS Clinic • May be asked to return for re-test in 6 months or one year • Many of these people do not later develop a dementing illness

16. How Patients and Families may Feel • Embarrassed • Insulted by patient being asked “simple” questions • Disloyal- having to confront, insist on assessment • Afraid of/upset by family conflict • Worn out balancing carer role with other responsibilities • Person with dementia may be suspicious of motives of family and friends • Family may think unwell person is being deliberately difficult/lazy • Angry/resentful due to difficulty of tasks/family relationships • Guilty about resentment/inability to provide support needed/ needing help from others • Craving respite/understanding/information • Denied supports due to scarce resources, service gaps and barriers

17. Why Pursue Diagnosis at All? • Problems may not be caused by dementia at all • Problems may be treatable- medication to optimise memory, delay symptoms -non-pharmaceutical strategies • Person’s impairment may affect responsibilities- school crossing supervisor, car driver, managing finances • May be vulnerable in dealing with unexpected situations • Decisions could be made while person still has capacity- will, appoint power of attorney/guardian, make provision for dependent adult relative • Improve safety/amenity of home to enable person with dementia to stay at home as long as able/happy • Organise support services, social supports for person with dementia and family • Have important conversations about present and future care preferences

18. Expressive Aphasia Loss of ability to speak May still be able to form ideas understand speech of others Communication aids such as word boards, music may assist Receptive Aphasia Loss of ability to understand what others say and do Staff may use actions or physical guiding to communicate Expressive and Receptive Aphasia

19. Special Circumstances1: Younger Onset • May not be recognised as dementia , with very serious social and financial consequences • Encourage creative thinking to make best of available time • Person with dementia may have young children/ teens who need different types of support and understanding as they deal with demands of high school, loss of parental guidance • Genetic questions

20. Special Circumstances2: Down Syndrome Not all people with Down Syndrome will develop outward signs of dementia, but all will have brain changes consistent with dementia of Alzheimer’s type by mid 50s May be resident carer for elderly parents Family may have experienced stigma disenfranchisement insensitivity in the past

21. Special Circumstances3: Culture/Language Diversity • Different levels of knowledge, understanding, stigmatisation of cognitive impairment in different cultural groups • Need for culturally sensitive styles of care • Person with dementia may lose second language ability and revert to first language- eg long term memory ispreserved for longer in dementia of the Alzheimer’s type

22. Special Circumstances3: Socially Isolated People • Family members overseas/interstate • Same sex couples excluded by family/ church/community • Dual disability-vision/hearing impairment • History of substance abuse • Mental illness

23. Clinical and Social Information can enhance the Pastoral Response • Being aware of the journey may enhance supportive presence • Clinical and systems knowledge • Allow greater depth of understanding • Guide us in our communication style • Understanding clinical aspects of dementia supports PCs in navigating the less predictable environment in which adults are behaving in unconventional ways due to cognitive impairment • Enable education and support of families as difficult realities are faced • Knowledge gives insight into behavior and care practices of care staff • Convey respect, understanding to paid care staff in care environment • Confidence in pastoral care practitioners and chaplains inspires confidence in others

24. Useful Resources • Alzheimers Australia www.alzheimers.org.au • Dementia Helpline 1800 100 500 • CDAMS Clinic- one in each region • Receive assessment, develop care plan, connect with services • Dementia Behavior Management Advisory Service (DBMAS) 1800 699 799 • E. MacKinlay, C. Trevitt Facilitating Spiritual Reminiscence for Older People with Dementia • A Voice at the Table An integrated model for pastoral care in Aged Mental Health – available late 2011