towards best practice for older persons from cald backgrounds · for older persons from cald...
TRANSCRIPT
Towards Best Practice in
Dementia Day Activity Programs
for Older Persons from
CALD Backgrounds
International Federation of Ageing Conference Melbourne, Tuesday, 4 May 2010
John Lawrence,
Project Coordinator, NEMICS
& Nirmala Abraham, Manager,
Aged & Disability Services, Spectrum MRC
Acknowledgements
Loretta Quinn, PhD student, National Ageing Research Institute, Royal Park, Melbourne
Milena Pinamonti, ex-Coordinator, Yanada House, Northcote, Melbourne
Lubica Petrov, Manager, Centre for Cultural Diversity in Ageing, Hawthorn East, Melbourne
Overview
Why Dementia Day Activity Programs for
CALD clients?
Recommendations from Current Theory &
Research Evidence
Example 1: Yanada House
Example 2: Intergenerational Program
Example 3: Music & Singing
Some Conclusions
Why adapt Dementia Activity
Programs for CALD clients?
Aged Care Act (1997) requires provision of
recreational activities appropriate to individual interests.
Aust CALD-background elderly population rapidly growing as proportion of aged – especially ‘old old’
Alzheimer’s Australia Report (1 Sept. 09) identifies CALD-client specific problems & program dev’t as major priority
NSW ‘Planning Ahead’ Report (2008) highlights CALD issues (& offers useful leads for action)
Dementia research is showing us…
Memories define ‘who we are’
Importance of individual cultural identities
Memories of our first 25 years remain the
most significant for the rest of our lives
Vital for our feelings to be expressed,
validated and that we feel understood
Current Dementia Theory
recommends ..
Montessori-based approaches advocate ‘doing
activities with, not for, our clients’.
‘Strengths-focused’ (not ‘deficits’) programs
Validation theory – affirm the individual’s
personal experience of the world
Aligns with Govt policy (eg. Victorian HACC
guidelines for ‘Active Service Model’ rebuilding
& maintaining autonomy, self-respect, capacity
not simply a ‘person-centered > dependency
NSW ‘Planning Ahead’ Findings 2008
CALD groups (Italian, Chinese, Vietnamese) often:
have limited knowledge & understanding of dementia
see dementia as a normal part of ageing
classify dementia as similar to madness
associate dementia w. stigma, shame, denial
diagnosed at more advanced stage
have significant service underutilisation
Mainstream services must gain cultural competence: Recruitment + Skills acquisition + Communication capacity
Dementia Issues for the CALD client
‘Double loss’ of communication capacity –
dementia & English language
Language barriers incl. dialects
Confusion of different cultures/ values
Same cultures, diverse behaviors
associated with symptoms of dementia
Adjusting to major transitions ie. increased
dependency, loss of authority, home into
residential life
Challenges for Diversional Therapists
working with CALD clients
Understanding the role of cultural activities
for people with dementia
Multiple language/ communication barriers!
Behavioral challenges associated with
dementia
Managing diverse cultural needs within a
single group
Finding appropriate activities to suit each
INDIVIDUAL’s cultural needs/interests
Need for More Evidence
Lack of:
Aust research on dementia in CALD populations
communication of good practice models and ideas
recognition of CALD issues in ‘mainstream’
dementia practice
translation of ‘theory’ & policy into practice
involving /training staff & volunteers from CALD
communities
documentation of successful programs
Early Dementia /
Community Day Activity Program
Yanada House, Northcote
Yanada House
Assessment
Initial Needs
Assessment
Cognitive Abilities
Psychological
Medical History -
Medications
PADL’s
ADL’s
Social support
Social History
Past & Present
Interests
Diet
Mobility
Continence
Carer Assessment
Health concerns
Stressors
Support used
Social Supports
available
Needs
Linking with Carer
Support Group
Referral to CCRC’s
Additional in-home
supports
Availability to attend
dementia day activity
programs
Philosophy of Care Value uniqueness &
individuality of people living with dementia & their carers
Equitable access to support
Sensitivity to individual cultural background & life experiences
Recognise need for people to maintain connections within their community.
Uphold the right for the individual to dignity, respect, privacy, choice and confidentiality
Recognise behaviours have meaning & people living with dementia have retained skills & knowledge
Focus on person's assets & strengths to restore a sense of self, self worth & purpose.
Men’s Group
meets needs of
active men
Special Interest
Groups
Activities Types
Activity Daily Living
Cooking
Gardening
Craft
Celebratory
Physical Activities
Exercises
Ball Games
Music and Dance
Aims
Retain abilities of daily living
Retain fine motor skills
Connection with events
Support gross motor skills and physical abilities
Enjoyment
Celebrating
Social Events
Craft & Other Activities
Cooking
Activities
Physical
Activities
Friendships
Low to Moderate Level
Dementia / Community
Setting
An Intergenerational Program
Nirmala Abraham
Spectrum Migrant Resource Centre
Intergenerational Project Model
Project initially piloted with the Lalor North
Primary School 2009
Aims: To give younger & older participants
opportunity to interact & form friendships
&.. To enable students to learn about
community services addressing needs of
different cultures & people with dementia.
Most older participants suffered from low
levels of dementia.
Rationale
Raise awareness of ‘dementia’ & its effects.
Enable the young to understand how a loved parent /grandparent suddenly changes behaviour & interactions with them.
Learn to talk, listen to & value elderly participants
Help students discover wealth of knowledge of different times & places.
Mutual opportunity to be in touch with each other’s wisdom – through crafts, singing, dancing, cooking, and sharing stories.
Project Scope
3 Primary & 3 Secondary Schools
3 High Needs Dementia Planned Activity
Groups (PAG’s):
> Macedonian
> Vietnamese
> Italian
Activities
Handcrafts that elderly participants were
familiar with in countries of birth - engaging
elderly dementia client eg. weaving, gluing
sticks together to make hand crafts &
sharing knowledge with students
Cooking bread, pasta or traditional biscuits
together
Singing and listening to familiar ethnic music
& that they can relate to…with students
Other Activities
Traditional dancing – a common activity with many
ethnic groups
Sharing stories of their past experiences with the
children
Students reading to the elderly
Students assisting the elderly to surf the net
Outcomes
Increased a range of early intervention activities – ameliorating some impact of dementia onset
Improved local support for families and carers including greater participation in planned activity groups
Raised awareness of ‘dementia” among school children to break down myths & barriers to communication & friendship
Enabled better understanding among younger generation of wealth of knowledge & skills that elderly PAG participants from cultural and linguistically diverse
back grounds have to offer.
Next Steps
Success of the project has led to-
Inclusion of the trialed activities into future
Dementia-specific Planned Activity Groups
Fostering on going activities with school
children from both primary and secondary
schools
Advanced Dementia /
Residential Settings
Music & Singing
Music
Listening to familiar music
Singing familiar music
Dancing to familiar music
May prefer other cultures eg. Maltese
Playing instruments…especially drumming
Accessories eg. Scarves/handkerchiefs
Cultural rituals incl: no music due to loss of
loved one
Tips for Music and Singing
Know the meaning of songs you are using
If you want the resident to sing, the song
must NOT be too fast
Song must be in the right pitch
Encourage the resident to sing the song &
clap along with it
Residential Program:
An Example of Good Practice
Involving elders, families, school children
Partnerships for learning / sharing diverse music
incl: culturally familiar
Maintaining community links / building
friendships / sharing cultures
Celebrating in an all-inclusive ‘concert’
See Emmy Monash Aged Care DVD
“Generations in One Voice’ from Centre for
Cultural Diversity in Ageing
Points to Remember Become culturally aware / train staff
Encourage self expression /communication
Allow options reflecting cultural values
eg. some men may not want to cook
Encourage reminiscing / retaining strengths eg.
use pics related to their culture/interests
Use online resources eg. Centre for Cultural
Diversity in Ageing
Partner with ethnic groups, schools etc.
Key Message
All program participants need to:
feel able to communicate with the people they
share their time with
be assured they have been understood
retain their identity - ‘Who I am’ …
inclusive of the cultural or language heritage they
each individually value
Other Activity Options
Arts and crafts
Cooking/eating activities
Gardening
Reminiscing
Exercise eg. walking groups
Outings eg. to cultural festivals/concerts
Client Assessment
At Admission & Regular 3 mthly Review ..
Cognitive – functional capacity
Psychological – depression, past history,
mood disorders
Social – interests eg. music, hobbies etc.
Mobility – how mobile is the client??
Diet – is the client a diabetic? Does the client
have any swallowing problems?
Family Assessment
Ask family for info about moods, behaviors
etc. when completing the client assessment
Family a possible info source for the client
eg. past history, social interests, hobbies etc.
Availability to attend some activities ?
NSW Findings (2008): Knowledge
Confirmation that CALD groups:
have limited knowledge & understanding of dementia
seen dementia as a normal part of ageing
classify dementia as similar to madness
associate dementia with stigma, shame and denial
Prevailing perceptions inhibit both diagnosis and service access
Household composition (ie. who’s at home) a major determinant in identifying and responding appropriately to dementia
NSW Findings (2008):Diagnosis
Condition often diagnosed at an advanced stage ie.
Italian crisis point
Chinese and Vietnamese alongside other conditions
Referrals from ethnic aged care or community services
> LOTE GP = VITAL service nexus
Response is problematic ie.
Shame
Attempts to hide the condition
Denial
NSW Findings (2008): Carers
Strong sense of responsibility and “duty for care”
Carer arrangement varied according to family circumstances
> Spouse (female) usually the main carer
> In the absence of a spouse, adult children usually the carers
> Gender demarcation with female children playing a greater
role in personal care, while either male or female children provide info & service access role
Strong need to broaden concept of “carer” in CALD
communities
NSW Findings (2008): Access
More info in larger communities w. more developed service infrastructure
Awareness of information and advocacy services low
across all 3 groups (Italian,Chinese, Vietnamese)
Resistance to acting on info, as info alone unable to overcome cultural expectations of caring
Results in significant underutilisation of services in
all service types, except..
Brokerage type services appear to be accessed at a higher rate than mainstream
NSW Findings (2008):Implications
Cultural sensitivity
• Family structure/care arrangements
• Experience/exposure to dementia
• Education level/language competence
• Level of dementia
• Role of existing CALD services
• Bilingual GP’s
• Aged Care Assessment Teams
NSW Findings (2008): Implications
Need to meet minimum requirements Language/communication needs
– Cultural understanding
– Service preferences
Services
– Ethno-specific
– Multicultural
– Mainstream
Need for mainstream to gain cultural competence
– Recruitment
– Skills acquisition
– Communication capacity
Assessments & Care Plans for
PAG participants
Assessment for PAG participants with dementia are based on the persons care needs
Care Plans for participants also target carers respite requirements
Quarterly reviews for dementia clients, care plans are updated & workers are advised of clients individual needs.