Dementia Behaviour Management Advisory Services

Dementia Behaviour Management
Advisory Services
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Supporting workers • Advice • Information • Referral
Helping Australians with dementia, and their carers
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NT DBMAS- Aboriginal & Torres Strait Islander
Cultural Considerations for BPSD Best Practice
Management Project
•
Indigenous Australians As a percentage of the total
population
Based on Place of Usual Residence, 2006
Northern Territory (State) by Statistical Subdivision
•
And Australia
©
Commonwealth of Australia & PSMA Australia 2007
Viewed at www.censusdata.abs.gov.au/ABSNavigation/prenav/viewdata on 21/8/08
Helping Australians with dementia, and their carers
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Our projects purpose was: To develop guidelines
for Dementia Behaviour Management Advisory
Service Providers, relevant to working with
Indigenous Australians living outside the major
urban regions of Australia.
Mt. Liebig
North West of
Alice Springs,
Haasts Bluff
Aboriginal Land Trust
Approx. 200 people
Helping Australians with dementia, and their carers
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How we did this during 2007/08:
Project Officer : behavioural advisor for NT DBMAS team
Consultants: Cultural Advisors, Psychogeriatricians, Geriatricians
Focus Groups: NT, WA, Torres Strait: with community key person
for contact & feedback
Created guide: distributed for use by DBMAS providers Dec 08
Helping Australians with dementia, and their carers
Consultants:
Professor Tony Broe: NSW
Professor Leon Flicker: WA
Dr. Jill Pettigrew: NT
Dr. Sahandra Mahajani: NT
Dr. Dina LoGuidice: Vic
Ms. Venessa Curnow:
Mr. Cyril Oliver:
Helping Australians with dementia, and their carers
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Focus Groups
Borroloola – NT Top end (May/Aug)
Mt. Liebig – NT Central (April/Aug)
Thursday Island – Torres Strait (Oct)
Reference Groups: WA (June/July)
Kununurra, Warmun, Derby, Wyndham
Group meetings, interviews with individuals,
(paid carers & family carers), cultural
advisors
- using consistent questionnaire to gather
information
Helping Australians with dementia, and their carers
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Wyndham
Katherine
Thursday Island
Kununurra
Warmun- Turkey
Creek
Borroloola
Derby
Mt. Liebig
Australian Aboriginal Language Map:
www.decs.sa.gov.au/corporate/pages/default/aboriginalaustralia/
viewed 19 Nov 2007
Helping Australians with dementia, and their carers
Questionnaire used:
Questions for focus groups: Date______Where___________
•
1.What do you understand by the word, dementia? _________________________________
•
____________________________________________________________________________
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What do you think causes dementia?: __________________________________________
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What word/s do you use to describe dementia: ___________________________________
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2.If someone in your family/ community develops symptoms of dementia (acting strangely), where do you
go for help? ___________________________________________________
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3.What are some problems for the family / community when someone develops symptoms of dementia that
change the way they do things?
_______________________________________________________________________________________
________
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4.What are the cultural considerations that people who are going to help you from outside the community
need to know?
_______________________________________________________________________________________
_______________________________________________________________________________________
________________
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5.Is language a barrier to you getting the help you need? Yes No
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6.How can we communicate the best way? (pictures/talk/through AHW’s/through family) etc.
_____________________________________________________________________
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7.How can we gather the information needed to help the family manage the acting strangely associated with
dementia that is causing the problem? (Life History, when the behaviours happen, why they happen, what
you do about them, who to speak to)
_______________________________________________________________________________________
__________________________________________________________
Helping Australians with dementia, and their carers
•
Who filled in form:___________________________________________
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“Strong mind and
strong spirit, sharing
and caring together”
Cherylene
Nocketta
Warmun WA Sept
2007
Helping Australians with dementia, and their carers
Focus Groups – Opportunities & Challenges
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When making first contact about the project
requests came for education & information about dementia;
this enabled introduction of the project and partnership
building for future DBMAS support with local aged care &
health services.
When attending communities needed to ensure not interfering
with core service delivery of remote aged care programs –
staffing shortages, community events.
Helping Australians with dementia, and their carers
Major cultural considerations across all groups
around dementia care were related to:
•
•
•
•
•
•
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Kinship – relationships of family and position in community, obligation
Attachment to land – physically & spiritually
Language – communication, identifying
Relevance of time – need for relationship building, hear right story
Importance of cultural ceremony
Cultural perceptions of causative factors eg. Beliefs in curses, sorcery
Spiritual beliefs eg. natural transition of spirit going back to country
Noting that there are Specific cultural issues unique to individual language
and community groups who are differentiated by historical geographical
land affiliations (traditional land or sea) and history of the area with
local traditions.
Helping Australians with dementia, and their carers
What does this mean when helping manage
BPSD in remote A&TSI settings?
•
There are already well established Best Practice models for BPSD
management – related to an individuals
– life history
– carers perceptions of behaviours,
– carers/persons knowledge & understanding of dementia,
– environment (sensory and physical)
– psychosocial and medical management (Figure 2:DBMAS App 1 Op Guidelines)
-
this does not change when working with A&TSI people, but
needs to be viewed in a cultural & geographical context.
Helping Australians with dementia, and their carers
Case study – example of using guide
™ NT DBMAS visited East Arnhem ACAT
( Gove/Nhulunbuy) to introduce service and provide
education on the use of the KICA
( Kimberley Indigenous Cognitive Assessment)
™ Discussion re old lady with high risk behaviours, concerns for
re safety and Carer burden due to change in behaviours. Concerns
about how to meet the family, community and cultural needs to keep this lady
on country.
™ Lady is from a remote community: Numbulwar approx
½ hour flight from Gove/Nhulunbuy ( hour flight from Darwin
to Gove) or approx. 5 hour drive from Katherine
in dry season only. (~8 hour drive to Darwin- good day)
™ Respite services provided by Anglicare from Gove- closest residential aged
care facility 2 respite beds in Gove Hospital or Darwin (by plane)
™ Had never seen Geriatrician or had formal dementia diagnosis.
Helping Australians with dementia, and their carers
How did we provide a DBMAS service to meet Cultural
Considerations of this case.
–
DBMAS Liaised with local ACAT,
™ Spoke to remote aged care service- listened to
concerns offered advice re safety, locks,
gates for her home: considering implications of past cultural lifestyle
(freely walked as she chose, lived off the land successfully) position in the
community as a traditional elder, the harshness of the environment, carer burden
and reported behaviours.
™ Spoke to remote clinic staff – re medical concerns, gave advice re possible
deliriums.
™ Immediate risk identified and arranged transport (plane) to Darwin for respite, to
allow for further dementia screen and full assessment.
™ Respite to reduce carer burden.
Helping Australians with dementia, and their carers
Behaviour
BPSD
Person
Physical & sensory
environment
Care
environment
Carer
characteristics
Wandering
• 66 yr old.
•Non drinker
•Smoked as
young woman
•Phx head
trauma
•Seen by
Geriatrician
whilst on
respiteDementia
diagnosed
multiple
aetiology
•Remote Indigenous
community~800 people
•Free to walk around
community night and day.
•Fence around house but
gate not shut. House
condemned.
•Beach approx 500m away
from home, Salt water
crocodiles inhabit beach
area.
•Bushland to back of house
area, roaming dingoes and
buffalo
•Receiving CACP
service• Meals 2x day
breakfast, lunch
•ADL’s when able to
find lady
•Some social activities
•Known by all in
community
•Local health clinic.
Not seen by GP for
some time
•Elderly man –chronic
diseases himself
•well respected
community member –
minister of local
Christian church.
•wife (amputee from fire
accident) was clients
sister.
•Also cared for up to 6
other children
•Other community
members showed no
practical applications to
assist.
Helping Australians with dementia, and their carers
™ Assessed her in respite, liaising with Darwin ACAT and Geriatrician for
assessment.
™ Arranged to visit community to allay fears
and ensure all options considered.
Family/community very unsure she was
being cared for ‘proper way’- took photos and
video (after permission gained for this from family) and visited
community for reassurance re her emotional state and to show where she
was living- some family had never been to Darwin.
™ Gave education to family, clinic and aged
care service on community about dementia - via poster,
AIMHI resources, ‘yarning’- used Aged Care coordinator as liaison
(vouched for us) and his workers who acted as interpreters and link
Helping Australians with dementia, and their carers
™ Observed cultural issues: had to leave early due to death and sorry
business. Consulted in front yard, stayed in car or stayed in
‘respite’ centre as advised by locals.
™ Liaised between RACS & community for history gathering
(lifestyle programming), financial support.
™ Took photos of community, land, family with
permission for client to look at while in RACS.
™ Purchased painting from community: family member painted and
ensured permission to give her. No avoidance relationship needing
to be observed.
Helping Australians with dementia, and their carers
™ Community appeared happy when we left, but were they
convinced it was ok for her to stay off land?- needed to allow
time for further family discussion and decision making.
™ Adult Guardianship
™ DBMAS continued to support both community and RACS
during respite and into permanent placement
™ When main Carer visited Darwin for medical reasons. DBMAS
arranged for him to visit his sister-in-law at RACS.
™ At this visit further personalized
information was offered as trust was
continuing to be built.
Helping Australians with dementia, and their carers
™ Also offered assistance to the Darwin RACS to give
appropriate cultural care:
™ assist with access to culture/language education
™ resource provision (music/art), videos
™ appropriate activities.
™ culturally appropriate dress
™ access and linkages to community
Helping Australians with dementia, and their carers
Major cultural considerations utilized in this case
study:
•
•
•
•
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Kinship – relationships of family and position in community, obligation
Attachment to land – physically & spiritually
Language – communication, identifying
Relevance of time – need for relationship building, hear right story
Importance of cultural ceremony
Cultural perceptions of causative factors eg. Beliefs in curses, sorcery
Spiritual beliefs eg. natural transition of spirit going back to country
*Specific cultural issues unique to individual
Helping Australians with dementia, and their carers
™Flow on opportunity has been to work with ACAT and
remote Aged Care Service/clinics to increase awareness
of memory loss and changed behaviours.
™Therefore may help to avoid late stage diagnosis with
BPSD’s and allow assistance on community.
NT DBMAS wants to acknowledge the traditional owners of
the area of Numbulwarr for allowing us to be involved with
the care for this client by visiting her home country and
meeting with family there.
Helping Australians with dementia, and their carers
How t o help
Old People with Dementia Acting Differently
P
A
hysical
ctivity:
C
THINGS TO CHECK
See Doctor at clinic
Are they sick?
Medicines changed
Forgetting things more
Are they sitting down more?
Walking more
Not sleeping
Not doing what they used to
ommunication: Are they repeating stories
E
nvironment:
THINGS TO DO
Talking wrong way
Not understanding
Are they getting lost?
House changed
Noise / light different
Big mob people or missing family
A&TSI cultural considerations for BPSD management- think of the person’s own
•Life History: past outdoor lifestyle, cultural ceremony, communal living
•Kinship / family structure: avoidance relationships, correct decision maker
•Language: use interpreters- get right story
•Strong attachment to land both spiritually and physically
•Cultural perceptions of what causes BPSD’s and sickness
•Spiritual beliefs
•Build trust – take time to hear story
Help them do what they used to do
cultural way
Listen, don’t argue, take time, distract
Keep things their way
For more information and
help call
DBMAS Dementia Behaviour
Management Advisory Service
1800699799
Created by NT DBMAS 2009
Helping Australians with dementia, and their carersBackground Artwork by Cherylene Nocketta – Warmun 2007