Scottish Pilot of the Tailored Activity Programme Progress to date. Jenny Reid AHP Dementia Consultant NHS
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1 Scottish Pilot of the Tailored Activity Programme Progress to date Jenny Reid AHP Dementia Consultant NHS
2 Overview of seminar Setting the scene What is TAP? The National TAP pilot Progress to date Next steps
3 1. Raising Awareness 10. Future Focus 2. National Leadership 9. National, regional and local action planning 8. Research and Practice Development People with dementia, their family, carers and friends 3. AHP Expert Group 4. AHP Model Development 7. Partnership Working 6. Share Expertise & Support Staff 5. Advice, Education & Information
4 Some key facts and figures 86,000 people with dementia in Scotland in in 3 people over 65 will develop dementia Cost to UK economy is over 23billion (including 8billion worth provided by informal carers) each year * 50-90% of people with dementia experience behavioural symptoms ** * ** Parnetti et al (2001) Mechanisms of Ageing and Development
5 Why should OTs worry about behavioural symptoms? Behavioural symptoms are associated with: A faster rate of deterioration in dementia Increased risk of admission to care or hospital Higher levels of carer stress and depression Treatment options Recognition of limited effectiveness and associated side effects of drug treatments Mounting evidence for use of non pharmacological approaches Gitlin et al (2012) JAMA 308 (19)
6 Mind the gap.. Estimated to take 17 years for research interventions to reach practice Only 14% of scientific discoveries reach practice Practice environments complex and populations diverse = multilevel approach needed. Gitlin (2013) AmJOT 67 (2)
7 .. Can we work with a researcher to deliver an AHP evidence based intervention to people living with dementia and their families in Scotland?
8 The beginning of the Scottish TAP project
9 What is? an innovative home-based occupational therapy intervention that identifies interests and capabilities of individual s with dementia, develops and tailors activities to individual profiles and trains families in using activities as part of their daily care routines Gitlin et al (2009) pg 430
10 Three phases of TAP is delivered over 8 sessions in a 4 month period Phase 1: Assessment Phase 2: Implementation Phase 3: Generalisation and closure
11
12 Phase 1: Assessment Sessions 1 and 2 Assessment of preserved capabilities of person with dementia LACLS-5 ADM placemat Comportment Timed Up and Go
13 LACLS - 5 Involves three visual-motor tasks (leather lacing stitches) with increasingly complex activity demands Requires the person to attend to, understand and use sensory and motor cues from the task objects, verbal and demonstrated instructions and cues and feedback from motor actions during performance of the task.
14 ADM Placemat assessment Allen s Cognitive Level 4.2 MMSE=13; DRS - Attention = >82%; Construction= 41-59%; Initiation, Concept, Memory = <1%
15 Phase 1 (contd) Assessments with carer: Activity inventory for person with dementia Carer communication and management techniques Carer readiness for change Problem behaviours (NPI) Physical environment
16 Activity Prescriptions Person s abilities Activity goal Simplifying the setting for the activity Simplifying the activity Enhancing participation Communicating Effectively Strategies for you
17 Phase 2: Implementation Up to four contacts (mix of home visits and telephone calls) Introduce first activity prescription Demonstrate use of activity Instruct in use of relevant strategies Reinforce and validate carer techniques and person with dementia s participation Repeat with two other prescriptions
18 Phase 3: Generalisation and closure Final two sessions Review of basic strategies for using activities Review how to further modify activities in the future Generalise use of strategies in other care activities
19 TAP STUDY DESIGN Recruitment Screening Baseline Assessment (T1) Randomization N = 60 MMSE <24 CG reports boredom, agitation, behavioral problem CG providing care > 4 hrs daily Willing to learn activities Treatment Intervention Control 4 Months Post Baseline (T2) 8 moths Post Baseline (T3) Follow-up Assessment Follow-up Assessment Intervention Follow-up
20 Individuals with Dementia (N=60) Mean age = % male 77% White; 23% African American 54% < H.S. education Mean MMSE = 11.6 (range ) Medications: 78.3% on cholinesterase inhibitor or memantine) 32% taking psychotropic medication for behavioral symptoms 45% on antidepressants Average of 7.6 behavioral symptoms
21 Caregiver Sample (N = 60) Mean age = 65.4 Most females (11.7% males) 77% White 27.2% <High school education Most spouses (62%)
22 Tailored Activity Program - 4-Month Patient Outcomes (N=60) Outcomes Decline in frequency of behavioral symptoms Adjusted Mean p value Cohen s d Shadowing Repetitive question Enhanced activity engagement Enhanced pleasure Gitlin, et al., (2009). The Tailored Activity Program to reduce behavioral symptoms in individuals with Dementia: Feasibility, acceptability, and replication potential. The Gerontologist, Practice Concepts, 49(3), NIMH funded
23 Tailored Activity Program (N=60) % Reporting Improvement/Worsening of Behavioral Symptoms from Baseline to 4-months 80% 70% P= % 50% 40% 30% TAP Control 20% 10% 0% Improvement Worsening
24 Tailored Activity Program (N=60) % Reporting Patient Agitation at 4-months Baseline 4 months TAP Control Grp P=.014; Cohen s d=.75
25 9 Hours Caregiver Doing Things for Dementia Patient 19 Hours on Duty M e a n N u m b e r o f H o u r s p =.001 Control Experimental M e a n N u m b e r o f H o u r s p =.001 Control Experimental 4 Baseline Assessment Timepoint Four Months 10 Baseline Assessment Timepoint Four Months
26 The Scottish TAP project
27 Where? NHS Ayrshire and Arran NHS Dumfries and Galloway NHS Fife NHS Grampian NHS Greater Glasgow and Clyde NHS Lothian
28 Who? Working in partnership: Dr Laura Gitlin and Cathy Piersol The National AHP Mental Health Leads Action Group AHP Professional Advisor for Mental Health (Scottish Government, MH Division) Alzheimer Scotland Edinburgh University Queen Margaret University
29 What? Phase 1: preparation Phase 2: Training Phase 3: accreditation Phase 4: pilot and evaluation
30 Phase 1: preparation Many of the TAPpers were unfamiliar with the CDM Basic training in CDM and LACLS-5 completed TAPpers needed resources and equipment Provision of LACLS-5 and TAP protocols and manuals
31 Phase 2: training
32 Phase 3: accreditation
33 Phase 4: Pilot and evaluation 6 months Outcomes from over 100 cases Service evaluation of: Clinical outcomes Impact on OT services Feedback from therapists Feedback from clients/carers
34 Learning so far: Referrals Changing expectations Building confidence Supporting each other Winning over carers Sharing successes
35 Implementation Managers active support vital Time is important Resources Support
36 Successes Carers reporting that TAP had allowed them create quality time together Positive feedback for the manual focus on everyday life activity is the key to dementia
37 Next steps Evaluation of pilot NPI /QoL for clinical outcomes Narrative feedback from staff, patients and carers Implications for services Embedding in practice Moving from pilot to mainstream How to spread practice Scaling up training, accreditation and implementation support
38 Want to know more: Watch the webcast of Dr Gitlin s keynote address on nonpharmacological treatments and dementia Join and regularly check the AHP Community of Practice unities-of-practice/national-ahps-best-practicein-dementia-network.aspx
39 References/further reading Gitin et al (2008) Tailored Activities to manage neuropsychiatric behaviours in persons with dementia and reduce caregiver burden: a randomised control trial. American Journal of Geriatric Psychiatry 16(3) Gitlin et al (2009) The Tailored Activity Program to reduce behavioural symptoms in individuals with dementia: feasibility, acceptability and replication potential. The Gerontologist 49(3) Gitlin et al (2010) The cost-effectiveness of a nonpharmacologic intervention for individuals with dementia and family caregivers: the Tailored Activity Program. American Journal of Geriatric Psychiatry 18(6) Jutkowitz et al (2010) Evaluating Willingness to Pay thresholds for dementia caregiver interventions: Application to the Tailored Activity Programme. Interntational Journal of Pharmacoeconomics and Outcomes Research (ISPOR) 13(6)
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