6th UK Dementia Congress 2012
DEMENTIA ADVISERS: An Evaluation of the
Worcestershire ExperienceJenny La Fontaine
Professor Dawn BrookerJennifer Bray
Association for Dementia Studies
Association for Dementia Studies
Aims• How the service began• The Evaluation• What does the data tell us about the role?• How do Dementia Advisers, those who use
their service and those who work alongside them perceive the role
• Opportunities and challenges in delivering the service
Association for Dementia Studies
Acknowledgements• Department of Health• The Alzheimer’s Society, NHS Worcestershire and
Worcestershire County Council• The Dementia Advisers, Lorrain Cullen, Patricia Spencer and
Rachel Thomson and their Manager Gill Carter• The Dementia Adviser Service Implementation Group,
including Dawn Brooker, Kathy Dale, David Hitchen, Kumbi Mandinyenya, Carole Edwards and Bernie Coope
• All participants in the evaluation in particular the people living with dementia and their families and supporters
Association for Dementia Studies
How the Service Began• Bid for funding for “demonstrator site” submitted to DOH
in June 2009• Collaborative project between NHS Worcestershire
(Primary Care Trust), Worcestershire Health and Care NHS Trust, Joint Commissioning Unit, Alzheimer’s Society and University of Worcester
• Two full-time Dementia Advisers, employed by Alzheimer’s Society, commenced in December 2009 covering 2 localities
• Working alongside the Early Intervention Dementia Service
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The Evaluation• Compare and contrast the impact and effect of the
provision of services following diagnosis with and without a DA
• Consider the experience of the DA for people living with dementia and their family/ carers
• Determine the skills, facilitators and barriers to the success of the DA role
• Enable commissioners to make evidence based decisions regarding the impact of such services and their ongoing financial support
Association for Dementia Studies
The Evaluation• Dementia Adviser experience
• Monthly Interviews over the life of the demonstrator project• Analysis over time to understand the experience and lessons to
be learned as well as the skills and expertise needed• Experience and impact of service for People Living
with Dementia and their Families• Two time points, those in receipt of DAS and those without• Measures exploring quality of life and wellbeing• Qualitative interviews
Association for Dementia Studies
The Evaluation
• Stakeholder Perspectives • Two time points• Stakeholders including members of EIDS, CMHT’s,
Commissioners and Managers• Stakeholders in receipt of referrals from the DAS
• Analysis of the data produced by the DAS in the client records system
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FINDINGS FROM THE CLIENT RECORDS SYSTEM
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The breadth of the Dementia Adviser role
• Provide information on a range of dementia-related topics• Medical• Social• Emotional• Financial• Legal
• Broad knowledge required by the DA
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Diagnosis
Living well
Money
Health
The future
Emotions
Legal decisions
Relationships
Driving
Other
0 50 100 150 200 250 300
Type of information provided
Number of times provided
Nature of contact with clients• DA requires strong
communication skills• Phone calls (less than
20 minutes)• May be first contact
with client• Often initiated by client
• Meetings (around 1 hour)• More in-depth
knowledge required
Association for Dementia Studies
52%
5%
14%
8%
16%
4%
1%Summary of type of contact
Phone call
Meeting at office
Meeting at client's home
Meeting elsewhere
Letter
Other
Who is referred?• 329 referrals in total
(Jan 2010 – March 2011)• 190 for Wyre Forest• 139 for Redditch &
Bromsgrove• Majority of referrals
were for carers or family members• Not the intended clients
Association for Dementia Studies
Person with dementia Carer/Family Member/Friend
0
20
40
60
80
100
120
140Summary of referrals per area
Wyre ForestRedditch & Bromsgrove
Num
ber o
f ref
erra
ls
Signposting• DA needs wide
knowledge base of services in their area• Created a
Guidebook of services
• Suitable services do not always exist
Association for Dementia Studies
Advice and support (emotional)Advice and support (financial)Advice and support (general)
AdvocacyDay support
Dementia cafésDementia support
Home supportHome support from other providers
Information provisionOutings and day trips
Residential/nursing home careSinging for the brain
Social careSocial events
TrainingTransport
Other services
0 10 20 30 40 50 60 70 80
Guidebook services referred to
Number of times referred to service
Breakdown of referrals
• Redditch & Bromsgrove slower start• Less awareness of dementia and role of DA
Association for Dementia Studies
January 2010
February
March AprilMay
JuneJuly
August
September
October
November
December 2
010
January 2011
February
March0
5
10
15
20
25Referrals per month for different areas
Wyre ForestRedditch & Bromsgrove
Num
ber o
f ref
erra
ls
Bromsgrove added Maternity leave
Referral source• People living with
dementia• EIDS & CMHT main
referral source• Carers and family
• Self referrals as well as EIDS & CMHT
• Wide range of organisations/groups actively referring to DA service
Association for Dementia Studies
EIDS
CMHT
Voluntary Sector
Carer, family member or friend
Self referral
Social Services
GP
Person with dementia
Other NHS
Housing Association
Other
0 10 20 30 40 50 60
Referral sourceCarer/Family Member/Friend
Person with dementia
Number of referrals
FINDINGS FROM THE QUALITATIVE INTERVIEWS
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Alongside through the Journey
“I have had a few people phone me
up, these are people who I have met before, then
probably about 2-3 months later,
they're phoning me now saying ‘could you come out and see us
again’”
“A point of contact for people with
dementia and their
carers, their families”
“When I’ve been in bits,
DA’ been there, she’s given me a
hell of a lot of support”
Association for Dementia Studies
Assessment
Association for Dementia Studies
“You’re picking up on everything when you first meet, meet them anyway. You’re picking up on, you know, are they getting their benefits, their entitlements, have they thought about the future, where are they in their diagnosis. So it was about, you know, how they were feeling and, is there anything they’re struggling with, did they need. So I was trying, you try and pick out what it is you can help with. Are they isolated, are you looking about, you know, is this person going to benefit from some peer support, you know? Are they going to benefit from being more involved, be getting out into the community more? Is it more on a personal level? Coping strategies, is it about the memory?”
The Work of the Dementia Adviser
• Accessing services“Well we feel... relieved and quite impressed that there is so much help out there”
• Advanced planning“[DA] yesterday talking about the power of attorney and she was telling me what to expect with [my wife]”
• Information re accessing financial support“She sent us a form actually, or got the form sent to us”
Association for Dementia Studies
Association for Dementia Studies
The Work of the Dementia Adviser• Information giving, relating to illness and coping
“She came out and brought me a file, a folder with lots of information about dementia and I have been on and off the phone to her actually”
• Reframing “He’ll always be your Dad, but it’s the illness that’s... Which really helped me to understand it better than ‘Oh me Dad hates me’”• Enabling identification of practical solutions
Knowledge Skills Attributes
Dementia (different types) Ability to work independently Person Centred Value Base
Psychosocial impact of dementia Interpersonal and Counselling Skills including active listening
Empathy
Experience of living with dementia
Presentation/ Teaching/ Training skills
Resilience
Coping strategies Problem solving and creativity Reflect upon their practice
Local Services Ability to negotiate relationships with a wide range of people
Selling oneself
Sources of information Time and self management In-depth experience of working with people living with dementia
and their familiesKnowledge of family
relationshipsFlexible and adaptable in their work
with othersOpenness and approachability
Having a degree Having a degree Enabler
Ability to work with couples and families who may have competing
needs
Assertive and confidence in working with a wide range of
organisations and professionalsTelephone communication skills Creativity
Who Receives a Service?• Family members in caring roles• The Worcestershire experience: later in the
journey and impact of the illness• Dementia in a relational context
Association for Dementia Studies
“We are ... aware of her condition, we’ve got the help that we need, which we didn’t know was even existed at one time, and we’re living with it”
“So it is still about giving his wife a break, but in a way that he was happy with; he didn’t just want to be shipped off to a day centre, it is trying to stay person centred whilst meeting different people’s needs.”
What Works?• Partnership Working• Face to face contact, and continuity • Clarity of role (and boundaries of role)• Preparation of the area and services• Being outside of statutory provision• Networking Networking Networking Networking
• Resilience
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Challenges• Long lead in time (linked to preparation of the
areas/ services)• Where referrals come from• The Emotional Journey
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“But you know it’s never gonna be enough, and that’s the difficult part. For that very short little period, you know it is a 24/7 job. So, I think, without, probably without the skills that I learnt when I was training in my counselling, and my, my years [working in this area] and working with people with dementia and trying to understand the person, I think without that I couldn’t have done it, couldn’t have done the job”.
Challenges• Unmet Need / Services to live well with
dementia
Association for Dementia Studies
“I had a gentleman, I know they did country walks nearby, I asked him ‘do you think you would enjoy that?’ he went ‘hmmm, I might’ and I said ‘shall I ring and ask, we could look at going?’, it said it was accompanied, if he could befriend another gentleman the same age, he could enjoy that; but I rang to say could he take the dogs which are like his baby, and it was ‘no’, and I asked about it being accompanied and it was ‘well there are people at the front and there are people at the back and in the middle, to make sure nobody falls back, because it is quite a big group’ but then when I mentioned who I was she said ‘oh he’d have to be accompanied’”
Thank you for Listening!
Photographs of people living with dementia taking part in The Enriched Opportunities Programme
