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

How clinical and social

information can be 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

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

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.

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 35Dementia in Australia. National Data Analysis and Development. Jan 2007. Aust Inst. Health &Welfare Canberra

Some common forms of Dementia

1: Dementia of the Alzheimer’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

Characteristics :• Step-wise deterioration of specific abilities• Changes occur following cerebral events such as stroke or

an accumulation of transient aschemic attacksSymptoms 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.

Some common forms of Dementia

2: Vascular Dementia

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

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

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.

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.

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.

Brain diagram

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 neuropsychology tests and in making purchase in a shop, checking correct change

• Executive function- being organised, making a cup of tea.

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

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

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

Expressive and Receptive Aphasia

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

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

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

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 is preserved for longer in dementia of the Alzheimer’s type

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

• 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

Clinical and Social Information can enhance the Pastoral Response

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