Monday, January 28, 2019
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Cognitive rehabilitation for people living with dementia: a practical framework for enablement
Linda Clare, PhD ScD CPsychol PBPsS FAcSS
Professor of Clinical Psychology of Ageing and Dementia
University of Exeter, UK
Rehabilitation and people with dementia
- Tackling barriers to participation and inclusion for people living with mild to moderate dementia in the community
- Enabling people to function as well as possible -- the role of rehabilitation
- People living with dementia are advocating for their right to rehabilitation
- Rehabilitation approaches for people with early-stage dementia -- cognitive rehabilitation (CR)
Cognitive rehabilitation (CR) for people with early-stage dementia
- With the right support people with mild to moderate dementia can adjust, learn strategies, and learn new skills
- The starting point is what people with dementia would like to change, improve or manage better
- Potential targets include everyday functioning, activities of daily living, self-care, language and communication, and social interaction
- CR is a personalised intervention, and is carried out in the person's usual setting so that it is directly related to daily life
What do CR therapists do?
- Use a collaborative, problem-solving approach to find out:
- What the person is currently doing and could potentially do, and how the person's environment supports or hinders functioning
- What the person wants to achieve (goal) and what s/he needs to be able to do in order to attain this goal
- Where there is a mismatch between what the person can do and what the goal requires, and where and why things go wrong
- Use a collaborative, solution-focused approach to:
- Plan how to address the goal using evidence-based rehabilitative methods - these could involve new learning, relearning, use of compensatory strategies or assistive technology
- Include other behavioural approaches where needed, such as anxiety management or behavioural activation
- Support the person in carrying out the plan, and monitor progress
- Enable family members or other carers to support the process
Feasibility studies of CR
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Clare et al, 1999, 2000, 2001, 2008 |
Pilot RCT: participant goal attainment
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N=69 randomised; Clare et al., 2010 |
Initial RCT: other positive findings
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Participants with dementia CR > control |
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Carers CR > control Clare et al., 2010 |
The GREAT trial: Goal-oriented cognitive Rehabilitation
- Aim: to definitively establish whether CR is beneficial for people with early-stage AD, VaD or mixed dementia
- Participants: We included 475 people with dementia, each with a family member as study partner. Participants had a diagnosis of Alzheimer's, vascular or mixed dementia and an MMSE score of 18 or above
- Recruitment: 1st April 2013 to 31st March 2016
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What happened in the GREAT trial?
- All participants identified goals and rated how they were currently doing (goal attainment). Study partners made an independent rating
- Half were randomly selected to receive CR while the rest continued with treatment as usual (TAU)
- CR participants had 10 weekly home visits from a CR therapist over 3 months
- All participants and study partners rated goal attainment again after 3 months
- CR participants had 4 more therapist visits over the next 6 months
- All participants and study partners rated goal attainment again 9 months after starting in the trial
- Other ratings - quality of life, mood, cognition, service use
What kinds of goals did GREAT trial participants choose?
- Engaging in activities and personal projects
- Trying challenging activities
- Using appliances, devices and gadgets
- Managing everyday tasks and situations
- Managing shopping, cooking and baking
- Remembering names and other details
- Retaining information and events
- Knowing what's happening
- Finding belongings
- Finding the way to places
- Engaging in conversation
- Keeping in contact with family and friends
- Managing emotions
- Caring for oneself
Examples of goals that were addressed in GREAT
- John wanted to overcome the fear of using household appliances, mobile phones and other technology that was undermining his independence
- Doris wanted to regain the confidence to collect her pension from the post office, and to stay safe by remembering to lock her door at night
- Shahid wanted to feel better able to engage in conversation, and resume his activities and interests
- Gareth wanted to stay independent and cook his own meals without burning the food, and to remember the names of his grandchildren
Did CR participants attain their goals?
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No significant changes in other measures |
Participant and study partner views
- Interviews by an independent researcher revealed that:
- The therapist enabled participants and study partners to develop and personalise rehabilitative strategies
- The relationship with the therapist was important
- The therapist also provided information, education and support
- There were improvements in participants' daily activities, and in well-being and quality of life for both
- The intervention empowered them and helped with the psychological adjustment to living with dementia
- They felt more confident, less anxious, and better able to cope
- "She explored areas, you know, that I hadn't thought about, and...I found it a great help." [Person with dementia]
- "(...) sometimes just reaching his goal, being able to do it after a few days. (...) Just little things like that, they help I think." [Family member]
- "The therapist made you think about things that you thought you perhaps knew, but think about them in a different way ... and approach them in a different way." [Family member]
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CR for people with Parkinson's disease dementia and Lewy body dementia: CORD-PD
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Other benefits were also observed e.g. more positive quality of life ratings by both participants and family members N = 29 randomised; Hindle, Watermeyer et al., 2018 |
Other emerging evidence
Study | Intervention | N | Duration | Intervention cf. control |
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Amieva et al 2015 (ETNA-3) France | Individual goal-oriented CR + carer telephone support | CR n=157 Control (usual care) n=154 | Weekly for 3 m + 6-weekly for 21 m | ![]() |
Kim 2015 South Korea | Individual goal-oriented CR + group Cognitive training (CT) | CR + CT n=22 Active control n=21 | Weekly for 8 weeks | ![]() |
Thivierge et al 2013 Canada | Structured training of problematic IADLs | Immediate training n=10 Wait-list control n=10 | Twice-weekly for 4 weeks | ![]() |
Voigt-Radloff et al 2017 (REDALI-DEM) Germany | Structured training of tasks and activities using errorless or trial-and-error methods | Errorless training n=81 Trial-and-error training n=80 | 9 one-hour sessions over 8 weeks | ![]() |
What have we learned so far?
- It is possible to improve and/or maintain specific everyday skills in the early stages of dementia
- Personalised, goal-oriented cognitive rehabilitation can help people with early-stage Alzheimer's, vascular or mixed dementia to improve their everyday functioning in relation to individual goals targeted in the therapy
- CR could form a useful component of post-diagnostic care pathways and community reablement or home care packages
- Because it is based around personal goals, cognitive rehabilitation could be adapted for different settings or cultures
CR is recommended in the UK
- NICE Guideline - Dementia: assessment, management and support for people living with dementia and their carers (NG97)
- NICE guideline Published: 20 June 2018
- nice.org.uk/guidance/ng97
- 1.4 Interventions to promote cognition, independence and wellbeing
- 1.4.4 Consider cognitive rehabilitation or occupational therapy to support functional ability in people living with mild to moderate dementia.
- The Memory Services National Accreditation Programme recommends that services offer CR to people with early-stage dementia
Implementing GREAT CR : GREAT into Practice (GREAT-iP)
- Introducing GREAT CR into practice in 15 partner organisations providing health or social care
- Co-producing resources with people with dementia, carers and practitioners
- Working with each partner organisation to create and implement a tailored and sustainable implementation plan
- Encouraging adoption through staff training followed up with ongoing supervision and support
- Creating a community of practice
Reflections
- Focusing on enablement is central to supporting people to live as well as possible with dementia
- Acknowledging the relevance of rehabilitation offers a tremendous opportunity to create a coherent approach to positive support for people with dementia, of any age, subtype, or severity, and their families
- A rehabilitation model offers a guiding framework for services and for health and social care practitioners and a practical means of providing person-centred, evidence-based interventions to maintain or enhance functioning, engagement, participation and inclusion
Further information
REACH: Centre for Research in Ageing and Cognitive Health, University of Exeter
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Further information about GREAT CR and GREAT-iP:
Dr Krystal Warmoth
Professor Linda Clare
http://psychology.exeter.ac.uk/reach/great/
Thank you!