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Staff, Members’ & Volunteers’
Conference & Awards Ceremony
“It takes extraordinary people to help people
with dementia do ordinary things”
Enhanced Sensory Community Care
The Sensory Programme
What is Enhanced Sensory
Community Care?
‒ Person centred care
‒ Sensory therapeutic
interventions
‒ Pays attention to nutrition
‒ Partnership with families
‒ Extended support for families
‒ Impeccable management of pain and other symptoms
Background to delivering the
programme in Dumfries
‒ Jenny Henderson wrote a paper on how to meet the
needs of people in the later stages of dementia living at
home
‒ In Dumfries and Galloway people attending day care
now have more complex needs than in past years
‒ The challenge of meeting the needs of a diverse group
of people
‒ Raised at commissioning meeting
‒ Funding identified through the Change Fund
Expected Outcomes
• People in the later stages of
dementia may be more able to
continue to live in their own home for
longer as a result of improved family
carer coping skills.
• Potential to achieve improved quality
of life for the person with dementia
and continued respite for family
carers.
• Staff and volunteers feel more
confident and have increased
knowledge and skills in supporting
people in the later stage of dementia.
Prof D Tolson, Dr K Watchman, Dr Naomi
Richards
The service
‒ Enhanced Sensory Community Care (known as
The Sensory Programme) delivered twice weekly
‒ 5 places per session (Thursday and Sunday)
‒ Two experienced members of staff supported by
trained volunteers
‒ The Functional Assessment Tool (FAST) and
Pool Activity Level (PAL) tool are used to identify
the stage of dementia.
‒ Steering Group established
‒ Externally evaluated
Support and training
For families
‒ Working in partnership
‒ Manage expectation from
the beginning
‒ Attend practical
information sessions
‒ Use some of the
therapies at home
Staff and volunteers
‒ Enhanced level promoting
excellence framework
‒ Specific training in
sensory interventions
‒ Continuity of staff and
volunteer support
‒ Close management of
staff to prevent „burn out‟
Breakdown of individuals supported
to date
• A total of 7 people supported - one
under 65
• 5 transferred from traditional day care
• 2 direct from the community
• 2 leavers (died peacefully at home)
All the families have been involved in
information and support sessions and
have taken part in the evaluation
Magic moments captured by staff
‘it’s nice to hear
families saying that
they didn’t have a lot
of communication
before, but now
they’re getting more
back’
She loves having her
hair brushed… she
will lean forward if
you ask her’
‘The activities brought
out occasional words
and even full
sentences’
Making cup cakes – The Great Bake
Off!
It was –
Extremely messy!
Lots of eating of the
sugar!
But one of the gentlemen
was able to demonstrate
considerable
concentration and icing
skills!
Very interactive and fun
Lessons learned
• Sundays are not popular often
considered to be a family day
• Initially the assessment criteria was
set to high
• Difficult to sell the new service to
community teams
• Transition to new service from
traditional day care had to be
managed sensitively
‘I really enjoy volunteering I
never hear the staff talking
about what a person can’t do
only what they can do’
Staff and volunteer comments
‘I did start out feeling a bit like
ooohhh, I wonder what was
going to happen here… but I
can see some real ,real
benefits from this’ ‘It just makes me
feel good relaxed
and
compassionate ‘
What next?
• Enough funding to deliver the service until
summer 2015
• Possible local redesign of day care services in
D&G to focus on those in the later stages of
dementia
• Completion of the evaluation
• Inform Alzheimer Scotland work on the later
stages of dementia with a view to roll out over
Scotland
• Possible wider application of the model to home
support
Staff, Members’ & Volunteers’
Conference & Awards Ceremony
“It takes extraordinary people to help people
with dementia do ordinary things”
Service Innovation & Developments
Post Diagnostic Support
Laura MacKechnie & Gayle Thomson, Dementia Link Workers, Perth & Kinross
Overview
‒ Project Background
‒ Pre-Project Analysis
‒ Project Objectives
‒ Service Model
‒ Project Outcomes & Experiences
‒ Next Steps
Project Background
‒ Funded by Change Fund Workstream 3
-“To improve access to specialist services for people living
with dementia and their families by shifting the balance
of care from hospital or long term care to community
based services and developing sustainable changes in
service provision”
‒ Funded since March 2012
‒ “Facing Dementia Together” Pilot
‒ Dementia Strategy Priority (2010)
‒ Government HEAT Target (effective from April 2013)
Pre – project analysis
‒ April 2012 – 1384 people in Perth & Kinross with a
diagnosis of dementia (NHST Dementia QoF Report,
September 2013)
‒ September 2013 – increased to 1448
‒ Significant gaps identified in both Pre & Post Diagnostic
Support
‒ Post Diagnostic Support delivered by CMHN‟s within the
OPCMHT‟s
‒ No dedicated service for Pre or Post Diagnostic Support
or Early intervention
Project Objectives
‒ To provide post diagnostic support to 100 families per
year using Alzheimer Scotland Five Pillar Model across
Perth City (Year 1) and North Perthshire, Perth City &
South Perthshire (Year 2)
‒ To support individuals and families with dementia for a
minimum of 1 year post diagnosis, in line with HEAT
Target (effective from April 2013)
‒ Improvement in access to quality Post Diagnostic
Support by a dedicated Alzheimer Scotland Dementia
Link Worker
Service Model
Year 1
‒ 3 Alzheimer Scotland Dementia Link Workers
‒ Based within Perth City OPCMHT
‒ Dedicated to provide Post Diagnostic Support
‒ Referrals received via OPCMHT
Service Model
Year 1
‒ Individual Caseload Supervision via CMHN‟s
‒ Management Supervision by Alzheimer Scotland Service
Manager
‒ Direct Access to Social Work Community Care Services
‒ Alzheimer Scotland‟s Five Pillar Model of Post
Diagnostic Support
‒ Social Work Documentation
Service Model
Year 2
‒ Model of support adapted following evaluation
‒ Locality based within 3 OPCMHT‟S: North West
Perthshire, Perth City & South Perthshire
‒ Clarification of referral criteria and pathway
‒ Removal of direct access to Social Work Community
Care Services
‒ Alzheimer Scotland Documentation/Health System
Project Outcomes &
Experiences
1. To provide Post Diagnostic Support to 100 families and
support for a minimum of 1 year
‒ Referral rate -132 families per year (January 2014)
‒ Carer Support provided in 60% of all referrals
‒ Locality split:
North Perthshire 19%
Perth City 35%
South Perthshire 46%
Project Outcomes &
Experiences
2. To improve access to quality Post Diagnostic Support in
Perth & Kinross
‒ All people referred to Dementia Link Worker Service
have been supported using Alzheimer Scotland‟s Five
Pillar Model
‒ Interviews with sample population (including people with
dementia & carers)
‒ Key common themes identified
‒ Short & medium term outcomes identified
Project Outcomes &
Experiences
Theme 1 - Reduction in fear and uncertainty surrounding
diagnosis
I‟m going to be honest, at the
beginning of last year, I was getting
quite depressed…I didn‟t know
where I was going – I was really
down so I really needed that help
from the Dementia Link Worker… If you didn‟t have
that link, you‟d be
lost I think – where
else would you go
apart from the
Doctor?
There were certain things, that I knew
within myself, that were happening that
were not due to depression…but I just felt
we were not being listened to. For a while
to be honest, I felt I was banging my head
against a brick wall trying to get someone
to listen…
Project Outcomes &
Experiences
Theme 2 - Importance of using a Person-Centred Approach
He‟d always say the Dementia
Link Worker understood…He‟s
often said I really think she
understands how I feel about
this. She‟s not dreary. Not too
light hearted either but more of
a positive thing. Which I think is
a good thing…
Everybody speaks about support,
but support is a word and a
nothing, but when you see the
person that makes a world of
difference
(At the Information group) I‟m
known as the chairman and I
came home and I
thought…isn‟t it nice that they
have that attitude to me? So
this is what I want to do…
But I think that‟s how the
Dementia Link Worker made
a difference, because she
was actually listening to
what we were saying…she
was an absolute breath of
fresh air!
Project Outcomes &
Experiences
Theme 3 - Reduction in carer stress and isolation through
carer support and involvement in Post Diagnostic Support
and planning
But I need that time to adjust, it takes
me a wee while to adjust. As long as I
can keep my health, that‟s the biggest
bit that worries me…but it‟s always at
the back of your mind you know, but
there again, the Dementia Link
Worker has been helping me with
that, with what I should be doing and
we‟ve got one or two things into place
The Dementia Link
Worker has been great
because she gives you a
surge of “that‟s a good
idea…you‟re living with
Alzheimer‟s…but you‟re
not going to stop living”
Project Outcomes &
Experiences
Theme 4 - Consistent Post Diagnostic Support and
progress within the 5 Pillar Model
‒ Written/Verbal information
‒ Dementia Information & Support Group
‒ Making/ maintaining/ reconnecting
‒ Dementia Café
‒ Discussions regarding future care needs/wishes
‒ Awareness raising regarding legal aspects
Project Outcomes &
Experiences
Theme 5 - Value of Peer Support
It’s a load off your mind,
knowing there is someone who cares and who has been through the same
experience that you have been through
She finds getting together very helpful
Project Outcomes &
Experiences Theme 6 - Importance of a specialist, knowledgeable and
reliable Link Worker
If I’m really concerned about something I can
mention it to the Dementia Link Worker
and she’ll get it attended to
She’s very knowledgeable, I think she would do a lot of homework . She would say something and surprise you
with saying something about another side of the condition, another way of
looking at things
Project Outcomes &
Experiences Theme 7 –Being supported to live positively with dementia
The Dementia Link Worker has been just
what we needed… She’s so positive about things
We’re a lot more determined I think…we’ve got big plans for this year. She’s given me this feeling that this is not necessarily that
we’ve got to allow this to rule our lives or to overwhelm us. What we’ve got to do is live life as if
there was nothing wrong and deal with things as they come up but not to sit and worry about them
all the time
Project Outcomes &
Experiences
3. Enhancement of existing services
I strongly agree that the Dementia
Link Worker has improved the quality of post diagnostic support…I
feel that they have been able to offer support early which is crucial
after being given a diagnosis. Dementia Link Workers have time
to spend with the person with dementia and are able to deliver a
personalised approach - CMHN
The introduction of an Alzheimer Scotland Link Worker has been invaluable in
providing post diagnostic support in a timely and person centred way. My sense is that the provision of this support to people
with dementia and their carers has prevented and alleviated distress. This is a good outcome for patients and carers but
has also allowed mental health professionals more time to assess new patients and respond to the escalating
needs of people progressing through their illness – Consultant Psychiatrist
Project Outcomes &
Experiences
4. Additional Outcomes and Service Development
‒ Development of Dementia Information & Support Groups
‒ Delivery of training and education to staff
Next Steps
Project Sustainability
‒ Self-sustaining peer support
‒ Self Management
‒ Future funding/Mainstreaming of Service
Staff, Members’ & Volunteers’
Conference & Awards Ceremony
“It takes extraordinary people to help people
with dementia do ordinary things”
Partnerships with Education including the
Digital Commonwealth
Iain Houston, Dementia Advisor
0141 887 1289
‒ A key aim: Raising awareness of dementia and
reducing stigma
‒ Argyll & Clyde dementia advisors have been
involved in education partnerships for several
years, these continue to strengthen and grow
Partnerships with Education
Most recently: Alzheimer Scotland Education
Initiative won ‘Best Education Initiative’ at the 2014
Scottish Dementia Awards
‒ The Initiative: Based on partnerships with several local
primary schools in West Dunbartonshire & Secondary
schools in Renfrewshire.
‒ Primary Schools: 2 sessions were delivered to primary 7
pupils at 2 primary schools in West Dunbartonshire as
part of a dementia friendly community initiative.
‒ Session 1: what is dementia?, our brain & how it works,
what can happen if our brain is damaged by something
like dementia
‒ Session 2: things that help people with dementia and
how people live well with dementia
Activity: How Does our Brain Work?
“It was really good, I can now help
my neighbour” (Primary 7 pupil)
‒ Secondary Schools: Renfrewshire dementia
advisor facilitated several dementia session for
3rd year pupils as part of their Youth Philanthropy
Initiative.
‒ Following these sessions several groups chose
to represent Alzheimer Scotland, with 2 groups
reaching the final.
‒ DAs are keen to continue making annual commitments
on an ongoing basis to schools in their area and more
schools have started to show an interest in becoming
involved.
‒ Through this initiative the Renfrewshire DA has now
began working with the University of the West of
Scotland, paisley campus, BA(hons) Social Work
students.
‒ This is leading to further exciting projects within the
university.
Further & Future Developments
Visit to UWS, Paisley, with SDWG
‒ ‘I’m more than a piece of paper’
(Member of the SDWG)
• Initiative inspired by the Commonwealth Games coming to Glasgow and the attention this draws to ideas of Global Citizenship and identity
• Aim: To enhance the capacity of individuals and groups to use digital media to ensure that their voices are heard and a digital commonwealth legacy is created.
• Reaches out to individuals and groups who may experience social, cultural or economic marginalization and help make sure their stories are heard.
• Ensure that people are not forgotten and outside society but an INTEGRAL part of it.
The Digital Commonwealth
‒ Through our partnership work with the UWS (Jennifer
Jones) we developed a 4 week creative voices song
writing group with 2 community musicians; Robert &
Carol, and members of our memory lane club.
‒ The project:
• 4 x 2hr sessions
• Sing-a-longs to reminisce through song
• Facilitated discussions to understand things that
are important to the group
• Developing these thoughts creatively into song
• Digitally recording this and making it available to
share as part of a digital commonwealth
Creative Voices
‒ https://www.youtube.com/watch?v=W5NFSJN1y-
I&index=2&list=PLcc0TZ9aBvemdCivUz0CEzxntFhvGM
_-c
‘Memory Lane’
Robert, Carol & members of memory lane club
Staff, Members’ & Volunteers’
Conference & Awards Ceremony
“It takes extraordinary people to help people
with dementia do ordinary things”