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									Integrating care in the South West
for health, well being and independence




Recognition and support for people with early
stage dementia
“How to” guide
ABOUT THIS “HOW-TO” GUIDE
                     Description
                     • This how-to guide is part of a series of tools designed to support
                       PCTs and LAs to improve the interface between health and social
  What is this
                       care
  toolkit?
                     • Other elements of the toolkit include:
                       – Integrating care in the South West – a handbook for improvement
                         (guide to enabling competencies and self-diagnostic)
                       – How-to guides on commissioning rapid response services and
                         reducing delayed discharges
                       – Benchmarking on health and social care indicators

                     • This how-to guide is aimed at PCT and LA commissioners aiming
                         for a structured approach to developing and commissioning early
  How can the
                         stage dementia services. It includes:
  toolkit be used?
                         – Commissioning plan for early stage dementia patients and their
                           families
                         – Pilot and rollout plan for setting up mechanisms for different
                           service providers (health, social, third sector) in the community
                           for earlier recognition of people with early stage dementia

                     •   Demonstrate joint leadership (1)
  Which of the       •   Develop strong partnerships (2)
  golden rules       •   Learn from users and carers (3)
  apply?             •   Involve all staff (4)
                     •   Produce robust business case (6)
                     •   Promote innovation in integration (8)
                                                                                               1
CONTENT




          • Overview dementia
          • Project approach
          • Sizing the potential
          • Setting up the project
          • Defining services
          • Piloting early recognition
          • Business case
          • Preparation of rollout/implementation
          • Time plan




                                                    2
WHAT ARE THE BENEFITS OF EARLY DIAGNOSIS AND
SUPPORT SERVICES?
                                    • Reduction of uncertainties
   Psychological                    • Opportunity to
   and social                         – Plan support and care for the future at a
   benefits                             point where the patient is still able to make
                                        informed decisions about own care
                                                                                                                     Aspired outcomes
                                      – Make appropriate legal and financial
                                        arrangements                                                                 • Improved patient and
                                      – Stabilise family dynamics                                                        carer quality of life
                                    • Education of carers about disease and support                                  •   Improve carer health
                                      opportunities                                                                      and well-being
                                    • Carer respite/holidays                                                         •   Independence as
                                                                                                                         long as possible (e.g.
                                    • Potentially dangerous activities: cooking,                                         through assistive
   Prevention of
                                      operating machinery
   harm from failure                                                                                                     technologies)
                                    • Driving problems                                                               •   Delay in progression
   to recognise
   dementia                                                                                                              of effects of disease
                                                                                                                     •   Better health
                                    • Appropriate treatment of co-morbidities                                            outcomes for
                                    • Medication (recommended by NICE for                                                treatment of co-
   Medical                                                                                                               morbidities
                                       treatment of moderate Alzheimer‟s)
   benefits



Source: LLiffe et al, Sooner or later? Issues in the early diagnosis of dementia in general practice: a qualitative study, Family
         Practice (20): 4; Relkin, Screening and Early Diagnosis of Dementia, The American Journal of Managed Care, 6:22;
         Ashford et al, Should older adults be screened for dementia? It is important to screen for evidence for dementia!,
         Alzheimer‟s & Dementia, 3                                                                                                            3
INDIVIDUALS WITH DEMENTIA AND THEIR FAMILIES MAY HAVE
BENEFITED FROM AN EARLIER DIAGNOSIS

                              “An earlier diagnosis for my mother would have
                              involved a referral “some-where” where my father could        “My own health
                              have learnt how to deal helpfully with the changes in         may not have
                              her rather than control and dominate her. She may             suffered so
                              have retained her confidence, self-esteem and                 badly”
                              courage.”


                                                        “Understanding their         “Someone to tell me
                             “Knowing that I            behaviour is due to an       what to expect. Fear of
                             wasn‟t imagining           illness and not being        the unknown”
Around 60% of all            things”                    awkward”
dementia cases
are not formally
diagnosed
                                                                        “It would have been realistic to
                                     “Knowing what the                  discuss with other people, and
                                     behavioural changes                make plans for improving life for H.
                                     could be”                          and me”


                                “I used to be quite impatient (for which I now
                                                                                        “Earlier diagnosis
                                feel very guilty) – and am sure a diagnosis
                                                                                        might have helped
                                would have helped me make allowances and
                                                                                        us talk about it”
                                keep on a more even keel”



Source: Carer Network Focus Group, Radstock                                                                    4
CARERS FEEL THAT SERVICES AND SUPPORT COULD BE
IMPROVED
                             “More information        “Giving
                             through GP about         people hope         “By having a central contract point
                             dementia.”               that there are      to answer questions (e.g. police
                                                      services that       08454567000) and publishing it
                                                      can help            (e.g., Poster at GP‟s surgery) so
                                                                          people can tackle the first steps to
                               “More respect          family &
                                                                          seeing if they do have a problem.”
                               from primary           carers.”
                               care regarding
                               the carer giving
                               relevant                                        “Information on what is
Services and
                               information.”         “GPs – since my           available would have been
support from the                                     husband was
community to                                                                   very helpful from the start.
                                                     diagnosed the GP          Even though I may have
individuals and                                      has never ever
                              “Raising aware-                                  thought we don‟t need any of
their families could                                 mentioned                 that the knowledge would
                              ness about
be improved                   dementia to help       dementia again,           have been there to think
                              families.”             since years.”             about it.”



                              “A DVD of a family‟s problems would highlight the kind of things likely to be
                              an issue (house too big, future financial problems, what care/help is avail-
                              able, accompanying physical problems such as decreasing mobility). The
                              video could show alternatives of increasing isolation and difficulty if nothing
                              is done, and vice-versa.”



Source: Carer Network Focus Group, Radstock                                                                      5
THERE IS SIGNIFICANT NATIONAL MOMENTUM TO IMPROVE
DEMENTIA SERVICES AND RAISE AWARENESS

  National dementia strategy – due in
  fall 2008 (Department of Health)      “Worried about your memory?”-
                                        campaign (DH, Alzheimer Society)




 Paying the
 price – the
 cost of
 mental
 health in
 England to
 2026
 (King‟s
 Fund)


                                                                           6
THE NATIONAL STRATEGY FOR DEMENTIA IS CURRENTLY IN
DEVELOPMENT
                                                  Development of National dementia strategy

                                                  • In consultation since June 2008, due for publication in fall 2008
 “The current system is failing
 too many dementia sufferers                      • The aim is to achieve improvements across three key areas
 and their carers. I am
                                                     – Raising awareness
 determined to this disease is
 brought out of the shadows.”                        – Early diagnosis and intervention
             Ivan Lewis, Care                        – Improving quality of life
             Services Minister
                                                  • Consultation document recommends
                                                     – Increased public and professional awareness of dementia
 “It has been estimated that the
 cost of dementia care exceeds                       – An informed and effective workforce for people with dementia
 that of cancer, heart disease                       – Good-quality early diagnosis and intervention for all
 and stroke combined… The                            – Good-quality information for those with dementia and their
 biggest mistake we can make                           carers
 is to assume that nothing can                       – Continuity of support and advice
 be done for dementia, and that
                                                     – Improved quality of care in general hospitals
 it is just a natural consequence
 of getting older.”                                  – Improved home care for people with dementia
               Alan Johnson,                         – Improved short breaks for people with dementia and their
               Secretary of State                      family carers
               for Health                            – A joint commissioning strategy for dementia
                                                     – Intermediate care for people with dementia
                                                     – Improved dementia care in care homes
                                                     – Improved registration and inspection of care homes
Source: DH: Consultation on a Dementia Strategy                                                                         7
CONTENT




          • Overview rapid response
          • Project approach
          • Sizing the potential
          • Setting up the project
          • Defining services
          • Piloting early recognition
          • Business case
          • Preparation of rollout/implementation
          • Time plan




                                                    8
PROJECT SET OUT




    Early recognition                    (Defining) community services


    • Relatives, social workers,       • Defining package of service for
      voluntary agencies etc. use a      self-help/support/
      memory test when they have         intervention for people with
      reason to believe that there       cognitive impairment/early stage
      may be a cognitive impairment      dementia
    • When a memory test indicates a   • The focus is on social services
      problem users/patients are         supporting the patient and the
      offered a visit by a “care         carer
      coordinator/advisor”




                                                                            9
   PROJECT APPROACH
                                                                                                        Prepare
         Sizing the            Setting up     Pilot early           Service           Business          rollout/
                                                                                                                             Rollout
         potential             the project    recognition           definition        case              implemen-
                                                                                                        tation

Timing   • -               • 2 weeks                     • 8 weeks                    • 2 weeks         • 2 weeks       • ongoing


What?    • Sizing the      • Develop         • Prepare pilot    • Evaluate           • Develop robust   • Prepare       • Track KPIs
           potential top       project         – Define              existing         cost benefit        time plan          and adjust
           down                charter           geograph-           services         analysis            for imple-         service if
                           •   Set up team       ies/team       •    Consider         illustrating        mentation          necessary
                               and             – Define              national,        benefits for
                                                 metrics/                             both health       • Develop
                               governance                            international                        commiss-
                               structure         KPIs                best             and social care
                                               – Define                                                   ioning
                           • Define roles                            practice        • Syndicate          specification
                                                 scope
                               and expect-                      • Engage with         with stake-         incl. KPIs
                               ations of     • Pilot new             stake-           holders             (engage
                               team            service               holders to                           stakeholders
                               members                               design new                           in definition of
                                                  OR                 service                              KPIs)
                                              • Alternatively
                                                – plan new
                                                service
                                                without
                                                pilot, e.g.,
                                                based on
                                                existing                                     These steps are described in
                                                already in                                   detail on the following pages
                                                some areas
                                                                                                                                   10
CONTENT




          • Overview rapid response
          • Project approach
          • Sizing the potential
          • Setting up the project
          • Defining services
          • Piloting early recognition
          • Business case
          • Preparation of rollout/implementation
          • Time plan




                                                    11
BEFORE STARTING A PROJECT ITS IMPORTANT TO                                                                                    ILLUSTRATIVE

SIZE THE POTENTIAL TOP-DOWN
                                                                                                                                      Potential
Alternative 1                                            Alternative 2


 Number of people in care                  xy              Estimated number of people with                          xy
 homes (admitted with                                      early stage dementia*
 existing dementia)
                                                                             x
                  x                                                                                                                 Sizing the
                                                           People with early stage dementia                         x%
                                                                                                                                    potential
                                           x%              living at home who would benefit                                         allows
 Admissions that could be                                  from community services                                                  commiss-
 delayed through community                                               x                                                          ioners to
 services for early stage                                                                                                           assess the
 dementia patients (in %)                                  Length of delay of care home                             x               opportunity
                  x                                        admission (in months                                                     to free up
                                                                         x                                                          resources
                                           x                                                                        x
                                                           Cost of care home after co-                                              through
 Length of delay (in months)                               payment of individual (per months)                                       integrated
                                                                                                                                    care
                  x
                                                           Number of avoided acute crisis                           x
 Cost of care home after co-               x                           x
 payment of individual (per
 months)                                                   Cost per acute crisis (A&E callout,                      x
                                                           A&E admission)
                  =
                                                                            =
* Projecting national estimates to local population (“Dementia UK”: A report into the prevalence and cost of dementia prepared by
  the Personal Social Services Research Unit (PSSRU) at the London School of Economics and the Institute of Psychiatry at King‟s
  College London, for the Alzheimer‟s Society)                                                                                              12
CONTENT




          • Overview rapid response
          • Project approach
          • Sizing the potential
          • Setting up the project
          • Defining services
          • Piloting early recognition
          • Business case
          • Preparation of rollout/implementation
          • Time plan




                                                    13
PROJECT CHARTER                                                                               EXAMPLE



Basic question to be resolved
What community services do we want to provide for early stage dementia services and how can we
identify those patients and their carers earlier to offer such services to them ?

Approach                                              Measuring success
• Understand existing identification and care         • Patient outcomes: Higher proportion of patients
  options for patients with early stage dementia        able to remain in the home, rather than admitted
• Define new approaches to identification and           to hospital or residential care setting
  support for patients with early dementia            • Patient satisfaction: improved satisfaction
• Involve carers and stakeholders                       (assessed through surveys where possible,
• Select a geography or team for pilot initiative       case studies)
• Weekly team meetings and fortnightly                • Ease of implementation: nurses and social
  leadership updates                                    workers comfortable with rationale for program
                                                        and with implementation approach

Important people to involve                           Barriers to success
• Leadership from PCT provider arm and LAs            • Professional silo thinking
• Stakeholders, e.g. specialist services, GPs         • Stigma attached to dementia
• Other stakeholders include SHA and experts



                        It is important to identify how you are going to work, who
                            you involve and how you measure success early on

                                                                                                      14
SETTING UP A SUCCESSFUL PROJECT TEAM AND GOVERNANCE
STRUCTURE




            • Define steering committee members


            • Assign project management lead and senior
              sponsor


            • Agree and define accountabilities for senior
              sponsor

            • Define rhythm of steering committee and weekly
              meetings

            • Align on HR and Finance support required




                                                                15
ROLES AND EXPECTATIONS OF PROJECT TEAM
            Expectations
            During project                                  Post project

            • Lead service definition and pilot planning,   • Continue to support
Working       and engagement with stakeholders               rollout,
Team        • Manage logistics for working team and          commissioning of
Leader        steering group (meetings, agendas, etc.)       services
            • Coordinate access to resources
              (e.g.key stakeholders)
            • Perform analysis
            • Ensure team objectives are met
            Note: ~50% of time for project duration         Note: 10% of time


Working
            • Participate in team problem-solving           • Continue to support
              sessions                                       rollout,
Team
Member      • Engage with stakeholders                       commissioning of
(general)   • Provide support ongoing to pilot               services
            • Help identify/prioritize opportunities
            • Help prepare meetings etc
            Note: 75-100% for project duration              Note: 10% of time
                                                                                    16
CONTENT




          • Overview rapid response
          • Project approach
          • Sizing the potential
          • Setting up the project
          • Defining services
          • Piloting early recognition
          • Business case
          • Preparation of rollout/implementation
          • Time plan




                                                    17
DEFINITION OF SERVICES SHOULD INVOLVE AS MANY
STAKEHOLDERS AS POSSIBLE
                          Possible
                          involvement      Description
                                           • Focus group with carers (and
                          Focus group       potentially patients)



 There are different                       • Workshop with different stakeholders
 possibilities to         Workshop           – GPs
 involve stakeholder in                      – Specialists
 order to discuss                            – Carer representative
 • Quality of local                          – 3rd sector representatives
   services and how                            (e.g., age concern)
   they be improved                          – Social workers
 • Potential new                             – Community nurses
   services                                  – Etc.


                                     It is important to define services
                                        based on the local context –
                                      therefore the engagement with
                                     various stakeholders is essential
                                                                                    18
STAKEHOLDERS SHOULD IDENTIFY POTENTIAL SERVICES                                              EXAMPLE

FOR PEOPLE WITH EARLY STAGE DEMENTIA                                                              High

                     Description                                                           Priority

1 Education
                     •   GPs, public, carers, support workers
                     •   Through specialist input
  Mentorship/
2 befriending
                     •   Relationships supporting carers and patients
                     •   Possibly together with creative arts
  Meaningful
3 occupation
                     •   For patients and carers
                     •   E.g., timebanks, activities, courses
                     •   Possibly together with identifying carer styles

4 Creative Arts
                     •   E.g., creating life-book
                     •   Possibly together with befriending/mentoring, getting
                         to know indiv., identifying carer styles

5 Respite
                     • More, flexible, innovative

  Getting to know
6 indiv.
                     • E.g., creating life-books (Jack vs. John)
                     • Possibly together with creative arts, incorporating into existing
                         services
  Identifying carer • Possibly together with meaningful occupation, creative arts
7 styles

8
    Access to        • E.g., into day centres, voluntary services
    services

9 Self-help groups
                     • For patients and carers

B
    Coordination/    • In community, focused on social services
    Care Advise      • With specialist input available                                                19
DETAILED DESCRIPTION - MEMORY LOSS COORDINATION                                                  ILLUSTRATIVE

AND CARE ADVISORY SERVICE (1/2)

                                                                       Referrals
                                                                       • SPA
     GPs                            Integrated Locality                • 3rd sector
                                           Team                        • Social, health sector
                                                                       • Self-referral
   CMHTs                                                               •…
                                             Memory loss coordination and care advisory service
                                             • Counselling
                                             • Signposting
                                             • In contact
                                             • „Visiting‟
                                             • Advice on assistive technologies and self-help
                                         Individual and their families
                                         • People with early stage dementia/
                                           memory loss
                                         • Not high intensity users
                                         • Individuals or families living at home

               • Service could be provided by members of the integrated community teams (e.g. those
                 who have a special interest)
               • Work on the business plan suggests that there is a positive cost-benefit to this service
               • Role similar to description of dementia care advisor role, described in consultation
                 document of national dementia strategy (recommendation 5, p. 37)
Source: Team                                                                                                20
DETAILED DESCRIPTION - MEMORY LOSS                                                     ILLUSTRATIVE

COORDINATION AND CARE ADVISORY SERVICE (2/2)

                • Individuals with early stage dementia living at home are allocated a case
 Description      worker who will provide memory loss/early stage dementia care advisory
                  – Counselling
                  – Signposting/Navigating
                  – Visiting, etc.
                • The memory loss coordination and care advisory service will also include
                  – 2–3 education session for the carer (in the group or 1:1)

                • Part of the integrated community teams
 Delivery       • Could be unqualified health and social workers, coordinated by qualified
                  social or health workers (e.g. community psychiatry nurse)
                • Could be delivered by PCT provider arm or other agency/organisation

 Facilitation   • Commissioning arrangements (~3 days)
 PCT/LA         • Review of contract (~3 day/year)
 resources

                •   Percentage of users satisfied with service
 Performance    •   Number of referrals actioned on within agreed timeframe (x/y days/weeks)
 mgt. metrics   •   Percentage of all users requiring follow-up visits and who receive it
                •   Percentage of users with a care plan
                •   Percentage of FTEs who do more than xy visits in a given timeframe



                                                                                                 21
CONTENT




          • Overview rapid response
          • Project approach
          • Sizing the potential
          • Setting up the project
          • Defining services
          • Piloting early recognition
          • Business case
          • Preparation of rollout/implementation
          • Time plan




                                                    22
THERE IS POTENTIAL TO USE EXPERIENCE ACROSS SOCIAL,
HEALTH AND VOLUNTARY SECTORS FOR PATIENTS‟ BENEFIT

                                               Service providers/
     Patients/Service users
                                               agencies
     • With undetected early-                  • In contact with service
         stage dementia                            users
     •   Without access to                     •   Knowing them and any
         appropriate care and                      changing behaviour
         support in the community                  really well




                   Can we use and improve this existing
                   connections and experience to
                   • Identify patients who might benefit from
                     self-help/support/intervention provided in
                     the community for cognitive
                     impairment/early stage dementia
                   • “Flag/Signpost” people who might need
                     further investigation (through the GP,
                     specialist services)

                                                                           23
PILOTING WILL HELP INFORM HOW TO INVOLVE SERVICE PROVIDERS
SYSTEMATICALLY IN EARLY RECOGNITION OF DEMENTIA




                 • Get different service providers (from public,
                  private and voluntary sector bodies) involved
                  and better informed about dementia
                 • Create experience with using and refining
   What to        triggering questions and memory test
   expect from
   the pilot?    • Get some information about the number
                  of cases picked up and what this means for
                  capacity required for further services (e.g.
                  memory clinic)
                 • Get different service providers from health
                  social and voluntary sector engaged together
                  in a very practical initiative




                                                                   24
DESIGN QUESTIONS FOR EARLY RECOGNITION PILOT

               Questions                            Examples
               • How many people/which              • 1–2 representatives each from health,
Scope           geography to involve?                 social and voluntary sector team



               • Which group of service providers •   Social workers (assessment)
Participants     to include in the pilot?         •   Rapid response
                                                  •   Domiciliary care provider
                                                  •   Day centres


Triggering     • What are the triggering            • Using a clinical test for assessment of
questions/      questions and the memory test         cognitive impairment – e.g., MMSE
memory test     service providers should be         • Developing triggering questions with a
                equipped with?                        carer focus group

               • What further actions can           • Visit by
„Referral‟      be offered to users/patients          – Care coordinator/advisor (as des-cribed
process         where triggering questions or the       before)
                memory test indicate                  – If care coordinator/advisor not
                a problem?                              established (yet) community nurses for
                                                        elderly
                                                      – 3rd sector agency focussing
                                                        on elderly
                                                                                                25
POTENTIAL PROCESS: TRIGGERING QUESTIONS WILL
INDICATE TO RELATIVES AND CARERS WHETHER TO
DO A “MEMORY GAME”

Do you have            No                            If carer is
reason to believe            Ensures patient         worried, give
that someone has             consent                 information
memory loss or                                       about where to
early stage                                    No    get services
dementia? (or, are
triggering                    Ask if you
questions fulfilled)          can do a                                Give general
                       Yes    memory                                  information
                                               Yes   Conduct the
                              game                   “Memory
                                                     game”
                                                                      Offer Care
                                                                      Visit




                                                                                   26
ROADMAP FOR PLANNING AND RUNNING A PILOT                                ILLUSTRATIVE


                                         Weeks
Activity                                 01   02   03   04   05   06   07    08

• Identify and contact service
 providers interested in participating

• Identify triggering questions
 and memory test

• Syndicate with stakeholders –
 e.g., GPs

• Introduce participants to pilot
 (and dementia)

• Run pilot

• Regular catch up with individual
 pilot participants and collection
 of recording form

• Workshop with test participants
 to share experiences



                                                                                  27
INTRODUCING PILOT PARTICIPANTS TO THE PILOT AND
DEMENTIA


                           Example agenda of introduction session

 • Pilot participants
   need to be
   introduced to the
   pilot and get more
   information about
   dementia
 • Can be done in
   “introduction”
   workshop session
 • Ideally brings
   together participants
   from health, social
   and third sector




                                                                    28
CONTENT




          • Overview rapid response
          • Project approach
          • Sizing the potential
          • Setting up the project
          • Defining services
          • Piloting early recognition
          • Business case
          • Preparation of rollout/implementation
          • Time plan




                                                    29
A ROBUST BUSINESS CASE IS CRITICAL FOR JOINT COMMISSIONING




                 • Establishing a credible business case is
                   critical to allow a joint commissioning
                   decision

                 • It allows the 2 organisations to understand
                   and fully buy-in to allocation of cost

                 • Costs are allocated based on proportion
                   of benefits for health and social care




                                                                 30
BUSINESS CASE METHODOLOGY




 Costs calculation              Benefits calculation            Who pays?

 • Cost of additional           • Delay in                                        Contribution
   services/support (e.g.         institutionalisation                        ~x% from health
   language therapy)            • Reduced healthcare            Allocation of     care
 • Cost of increased              for carer
                                                                    cost
   usage of existing        +   • Improved quality of           according to
   services                       life
                                                                  benefits
 • Cost of
   coordinator/care
                                                                                 Contribution
   manager                                                                   ~y% from social
                                                                                 care




                                                         A cost benefit analysis and
                                                          business case should be
                                                         developed for each service


                                                                                                 31
METHODOLOGY FOR BUSINESS CASE - MEMORY LOSS                                                   EXAMPLE

COORDINATION AND CARE ADVISORY SERVICE (1/2)

                 Demand for such a service

                 • How many people would use this service (e.g. based on
                   estimated prevalence)
                 • How much would they use the service (e.g. different levels of
                   demand ranging from weekly to quarterly)



  Cost                                              Benefit

  • Based on the estimated demand, how              • How many service users will benefit from
   many FTE are necessary to provide                  the service?
   service?                                         • What are the benefits? (How many
  • Who provides the service (level of                months delay in institutionalisation and
   qualification determines staff costs)              avoided crisis per service user
  • How much does staff training cost?                benefiting)

  • Is carer education included in the cost?        • What‟s locally the individual‟s contribution
                                                      to institutionalisation costs? (the PCT/LA
  • Will consumption of general public                benefit is only after individual‟s
   services for service users increase? By            contribution)
   how much on average?



                                                                                                     32
METHODOLOGY FOR BUSINESS CASE - MEMORY LOSS                                                         EXAMPLE

COORDINATION AND CARE ADVISORY SERVICE (2/2)
Assumptions                                               Cost
Overall
• Includes estimated early stage dementia patients,        Staff                                      x-y
  living at home, but not alone
• Includes also ~500 cases of cognitive impairment         Caregiver education                        X-y
• 20–30% of relevant patients would use service
• There are three different level of demand for the
  service                                                  Total                                      x-y
  – High – 50 visits/year (5-10% of cases)
  – Medium – 12 visits/year (10-20% of cases)
  – Low – 4 visits/year (85-70% of cases)                 Benefits
Costs
• Service is provided by a mix of professional                           • Delay in insti-            x-y
  qualifications                                            Financial        tutionalisation
• Includes staff education and training                                  •   Avoidance of
• Includes 2–3 education session for carers/year                             crisis
Benefits                                                    Quality of   • Assurance for
• 20–30% of the service users will benefit                  life             carer that they are
  – 3–9 months delay in institutionalisation                                 supported
• 10-15% - 1 crisis avoided                                              •   Access to services
• 25–50% of beneficiaries will increase public services                      for patients – e.g.,
  consumption – e.g., meals on wheals, by e.g. £                             befriending,
  2,000–8,000 per year                                                       timebanks
• Only benefits after individual‟s contribution
  considered

                                                                                                            33
COMMUNITY PACKAGE - GP EDUCATION                                                                                  EXAMPLE

                   • Informing GPs about local services and support for early stage dementia patients available in the
 Description           community
                   • Stressing the importance of support and services in the community for this group of people and
                       their families
                   • Training department (with input from mental health trust or other specialist – e.g., University of
 Delivery              Stirling, Dementia Services Development Centre)
                   •   GP continuing medical education platform

 Facilitation      • Coordination of material development (3 days)
 PCT/LA            • Coordination of sessions (5 session *1 day)
 resources

                   • GP training attendance
 Performance       • Impact on patients
 mgt. metrics          – Survey with GPs
                       – Survey with users

Cost, £                                                    Benefits

Development of material (one-off)               x                         • Delayed institutionalisation
                                                             Financial    • Avoided crisis
Cost per session                                y

                                                             Quality      • Access to community
                                                             of life          services
No. of sessions                                 x
                                                                          •   Identification of carer
                                                                              style and response
Total                                         x-y



                                                                                                                          34
COMMUNITY PACKAGE - BEFRIENDING/MENTORING                                                                       EXAMPLE

                     • Scheme matching mentors with carers, and Befrienders with patients to assist in coping with the
  Description           situation and giving moral support
                     • Target – 75–150 relationships

                      • Third sector agency – e.g., Age concern
  Delivery            • Should be started with a pilot


  Facilitation        • Agreeing funding for age concern initially (2 days)
  PCT/LA              • Reviewing projects and arrangement regularly (~2 days/year)
  resources           • Communicating service to public (2 days)

                      • Number of established relationships
  Performance         • Carer and patient satisfaction
  mgt. metrics


 Cost, £/year                                                 Benefits

 Coordination                                   x-y*                       • Delayed institutionalisation
                                                               Financial   • Avoided crisis
 Expenses                                       x-y*

                                                               Quality     • Social interactions for
 Total                                          x-y            of life         patients
                                                                           •   Mentoring for carers
                                                                               to better cope with
                                                                               situation and get
                                                                               practical tips


* Based on the number relationship                                                                                       35
COMMUNITY PACKAGE - MEANINGFUL OCCUPATION                                                                         EXAMPLE

                        • Different forms
   Description            – Timebanks
                          – Gentlemen‟s club
                          – Individual activity
                         • Voluntary agencies – e.g., golden oldies, dementia care trust
   Delivery


   Facilitation          • Agreeing funding for age concern initially (2 days)
   PCT/LA                • Reviewing projects and arrangement regularly (~1 days/year)
   resources

   Performance           • Number of participants
   management            • Carer and patient satisfaction
   metrics

  Cost, £/year                                                      Benefits

  Timebanks                                                 x-y*                 • Delayed institutionalisation
                                                                     Financial   • Avoided crisis

  Gentlemen‟s club                                          x-y**
                                                                     Quality     • Social interactions for
                                                                     of life       individuals
  Individual activity                                  X-y***                    • Respite for carers



  * Coordination, expenses and advertisement
 ** Based on cost per session and potential participants
*** Based on cost per activity and potential participants                                                              36
CONTENT



          • Overview rapid response
          • Project approach
          • Sizing the potential
          • Setting up the project
          • Solution generation
          • Piloting
          • Business case
          • Preparation of rollout/implementation
          • Time plan




                                                    37
PREPARING ROLLOUT OF EARLY RECOGNITION
                   Description
Incorporate        • Decide which triggering questions and memory test to use
insights from      • Draft communication for service provider to communicate to
pilot               users/patients based on experiences from pilot

                   • Decide which service providers to include in the rollout (from health,
Decide scope of      social and voluntary sector)
rollout            • Approach team managers and align rollout with them

Decide about       • Decide and align with stakeholders “referral process” for cases that
referral process    indicate a cognitive impairment/early stage dementia (e.g. to a
and put in place    dementia care advisor, memory assessment service)


                   • Set timelines for rollout
Set timeline and   • Coordinate with service providers rollout status and experience
coordinate


Put in place       • Put in place monitoring to track how many “referrals” are picked up in
monitoring           different teams
system             • This will inform capacity requirements for community services to be
                     provided to picked up cases
                                                Plan rollout only when appropriate “referral
                                                process” and services in the community are
                                                    in place/about to be commissioned
                                                                                               38
CONTENT



          • Overview rapid response
          • Project approach
          • Sizing the potential
          • Setting up the project
          • Solution generation
          • Piloting
          • Business case
          • Preparation of rollout/implementation
          • Time plan




                                                    39
ROADMAP EARLY RECOGNITION AND DEFINING SERVICES                                      ILLUSTRATIVE

                                         Weeks
Activity                                           01 02 03 04 05 06 07 08 09 10 11 12 13 14 15
Prepare and run a pilot
• Identify and contact service
   providers interested in participating
• Identify triggering questions
   and memory test
• Syndicate with stakeholders –
   e.g., GPs
• Introduce participants to pilot
   (and dementia)
• Run pilot
• Regular catch up with individual
   pilot participants and collection
   of recording form
• Workshop with test participants
   to share experiences
Defining services
• Evaluate existing services
• Engage with stakeholders and
 define potential services
• Develop business case
• Prepare for and commission services
• Incorporate insights from pilot in commissioning
• Services for early stage patients in place
Prepare a rollout
• Prepare rollout
• Rollout session for group managers
• Start using triggering questions/
   memory test
• Start monitoring “referrals”
                                                                                                  40
APPENDIX




           • Recording forms for pilot of early
            recognition
           • Triggering question
           • Potential memory tests
           • Agenda introduction pilot participants
            to pilot and dementia




                                                      41
RECORDS FORM (1/2) - OVERVIEW
                                                Name: _______________________

                                                Team: _______________________

        Triggering        Memory game done
        questions         (after consent from   Score memory
User    positive? (Y/N)   user)? (Y/N)          game (L, M, H)   Comments




Total

                                                                            42
RECORDS FORM (1/2) – CASE STUDY


General

Score memory game (L/M/H) _____________________________________________
Overall comments   ___________________________________________________


Interacting                                   Profile
• Was the user/patient open to your           Services (you know of) the patient/user is
 questions? (Y/N)                             in touch with already
                                              _________________________________
• Did you have the impression that the        _________________________________
 user/patient feels uncomfortable doing the
 memory game? (Y/N)                           What are your concerns?
                                              _________________________________
                                              _________________________________




                                                                                           43
TRIGGERING QUESTIONS WILL TELL SERVICE PROVIDERS
WHETHER TO HAVE REASON TO BELIEVE THAT A
MEMORY GAME COULD BE USEFUL


        Triggering questions (“Reason to believe that something is changing”)

               Have you observed a decline in ability to do/make things which she/he
               was previously very good?

               Do you feel she/he has lost a general interest in life?

               Does she/he have difficulties finding familiar places?

               Has she/he find it hard to remember names and activities you
               have done?

               Has she/he got any problems with doing daily activities from the
               beginning to the end, e.g., making a cup of tea or a sandwich?




Source: Based on Focus Group with Carers                                               44
OVERVIEW CLINICAL TOOLS THAT POTENTIALLY COULD BE                                                                                     High
USED AS MEMORY TEST IN COMMUNITY (1/2)                                                                                                Low

                                                                                                                       Evidence
 Screening-Tool                       Ease of use Quality of test                              Source
                                                                                                                       base
  1 MMSE (Mini                                           • Specificity: 71-92%                 • Boustani et           • Meta-
    Mental State                                         • Sensitivity: 56-96%                    al., 2003*             Analysis of >
    Examination)                                         • + pred. value: 15-72%                                         1 clinical trial

  2 BOMC (Blessed                                        • Specificity: 90%                    • Boustani et           • Meta-
    Orientation-Memory-                                  • Sensitivity: 69%                       al., 2003*             Analysis of >
    Concentration Test)                                  • + pred. value: 43%                                            1 clinical trial

  3 BIMC (Blessed                                        • Specificity: 65-90%                 • Boustani et           • Meta-
    Information-Memory-                                  • Sensitivity: 90%                       al., 2003*             Analysis of >
    Concentration Test)                                  • + pred. value: 22-50%                                         1 clinical trial

  4 STMS (Short Test of                                  • Sensitivity: 92%                    • Kokmen et             • One clinical
    Mental Status)                                       • Specificity: 91%                       al, 1987**             Trial
                                                           (used in patients with
                                                           score over 29)
                                                         • Specificity: 90%                    • Boustani et           • Meta-
                                                         • Sensitivity: 81%                       al., 2003*             Analysis of >
                                                         • + pred. value: 47%                                            1 clinical trial
  4 (AMT) Abbreviated                                    • Sensitivity: 81-90%                 • Rocca et al,          • One clinical
    Mental Test                                          • Specificity: 84-89%                    1992                   Trial
                                                         • + pred. value: 25%
                                                           (used in patients with less
                                                           than 7 correct answers)
*Annals of Internal Medicine, 138:11 **Mayo Foundation for Medical Education and Research, Mayo Clin Proc62(4):281-8                    45
OVERVIEW CLINICAL TOOLS THAT POTENTIALLY COULD BE                                                                                     High
USED AS MEMORY TEST IN COMMUNITY (2/2)                                                                                                Low

                                                                                                                       Evidence
 Screening-Tool                       Ease of use Quality of test                              Source
                                                                                                                       base
  5 Japanese                                             • n/a                                 • Int. Journal
    Esai/Pfizer Tool                                                                              of Geriatric
                                                                                                  Psychiatry
                                                                                                  11: 49-156

  6 SDS (Symptoms of                                     • Sensitivity: 97%                    • Mundt et al,          • 1 clinical trial
    dementia screener)                                   • Specificity: 69%                       2000
                                                         • + pred. value: 82%
                                                           (with 4 or more +
                                                           answers)
  7 Six-item screener                                    • Sensitivity: 89%                    • Callaham et • 1 clinical trial
                                                         • Specificity: 88%                       al, 2000
                                                         • + pred. value: 25%
                                                           (3 or more errors)

  8 Brain Function Battery                               • n/a
    Test




*Annals of Internal Medicine, 138:11 **Mayo Foundation for Medical Education and Research, Mayo Clin Proc62(4):281-8                    46
AGENDA – INTRODUCTION TO PILOT FOR EARLY             EXAMPLE

RECOGNITION AND DEMENTIA


          • Overall project              2:00–2:15

          • Dementia                     2:15–3:15
           – Common diagnoses
           – The course of the disease
           – Symptoms
           – Differential diagnoses
           – Prevalence
           – Local services

          • Break                        3:15–3:30

          • Triggering questions         3:30–4:00
           and memory game

          • Next steps after the test    4:00–4:15

          • Working together             4:15–4:30

                                                          47

								
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