PriDem Dementia Care Community th October 2019 28 th 28 1.3 .30 – 4.0 .00pm https://research.ncl.ac.uk/pridem/
Housekeeping • Toilets • Mobile phones • If you want to say something… • If you need a break… • Free spaces • Help yourself to tea, coffee, water and cake
Project update: Evidence reviews • Accepted for publication • Effectiveness of primary care models • The commissioner survey • In final stages • Implementation of post diagnostic support in primary care • Communication between professionals
Project update: Qualitative work • Interviews with service managers are complete • We have successfully recruited six services to look at in depth • Data collection is almost complete for three of these services • We have dates in the diary to visit the remaining services • We will complete data collection by the end of November • Greta will be going on maternity leave at the beginning of December
Feedback from last meeting • We talked about the practical aspects of post diagnostic support • Who should provide it? • Where should it be based? • How should people access it? • Your views will inform our new intervention
Plan for this afternoon • What should post diagnostic support include? • What the guidance says • Your priorities Break & birthday cakes! • Group activity on what is important and what is needed • Feedback on your priorities • Meeting close & feedback
• Co-designing Dementia Diagnosis And Post Diagnostic Care = COGNISANCE • JPND awarded grant • Australia, Canada, Poland, Netherlands, UK • Co-design with PLWD, care partners, primary care practitioners, specialists in area • Build on the work of PriDem 1 Newcastle University https://research.ncl.ac.uk/pridem/
National dementia guidance • Published 2018 • Based on the best available evidence & expert opinion
Feeling informed and involved in your care • Immediate review after diagnosis • Involvement in decisions about care • Information provision • Sharing information with family carers & between services
Maintaining memory and thinking skills • Combining memory treatments (e.g. cholinesterase inhibitor + memantine) • Prolonged use of memory treatments • Avoiding use of drugs that exacerbate memory problems • Offer group cognitive stimulation therapy (CST)
Supporting physical & psychological wellbeing • Offering a range of activities to promote wellbeing • Treating depression • Managing behavioural symptoms • Managing other long term conditions • Holistic care at end of life
Supporting carer wellbeing • Offer psychoeducational interventions and skills training
Coordinated and personalised care • Named professional to coordinate care • Develop a care and support plan • Maximise continuity and consistency of care • Transfer of information (e.g. care plans) between services • Regular monitoring (either scheduled or flexible)
Applying the guidance in practice • Guidance outlines key interventions that services should deliver • Limited details on how to do this in practice • One way to develop ideas is to start by thinking about outcomes • Claire will explain this a bit more
Outcomes • Often think in terms of services or activities – a dementia café, falls clinic, day centres BUT…. • We need to know what we want to achieve before we work out how we are going to get there • So it is important to start with the end in mind by considering outcomes
Identifying outcomes • A lot of work has been done to identify outcomes that are important to people with dementia and their families • We looked at this work to identify key outcomes • List of seven key outcome areas
Outcomes of post diagnostic support • Feeling well informed and knowing where you can get help & advice • Maintaining memory and thinking skills • Doing enjoyable activities & feeling connected to people • Supporting psychological wellbeing • Optimising physical health • Living in a safe & supportive environment • Supporting carer wellbeing
Activity 1 – Your priorities • Resources are limited • Difficult for a single service to cover all of these outcomes • We’ve been grappling to decide which outcomes our intervention should focus on • We’re not sure if it will be possible to do this but ….. …we’d like you to give it a try
What have you got to do? • You have each got a set of seven cards • An outcome is written on each one • Spread them out in front of you • Put the one you think is most important at the top • Put the one you think is least important at the bottom • See if you can arrange the rest in order of importance in the middle • Don’t worry if you are having trouble deciding • Leave the ones that you can’t choose between in a pile • No prizes for coming first, so just take your time
Now what? • Put a number 1 on the most important one • Number the rest in order • If you have a pile you couldn’t decide about, we’ll come round and help • Once you have numbered them, put them back in the envelope • We will ask Angela to look at the results and we’ll be sharing them with you later this afternoon
Comments and feedback • How was the exercise? • Did it make sense? • Was it easy or difficult?
Reward time!
Activity 2 • Now we want you to look in more detail at selected outcomes • Each heading can be broken down into more specific outcomes • We will look at one outcome in detail
Maintaining memory & thinking skills Outcome Example of service/intervention Making sure you are on the right medication Prescribing memory drugs Medication review Improving/maintaining memory & thinking skills Cognitive stimulation therapy (CST) Memory strategy groups Making sure you take your medication Providing a dosette box Organising medication prompts Medication reminder clock Recommended by national guidelines
Maintaining memory & thinking skills Outcome Example of service/intervention Making sure you take your medication Providing a dosette box Organising medication prompts Medication reminder clock Improving/maintaining memory & thinking skills Memory strategy groups Questions • Does this need: • Someone with dementia expertise? • A health or social care professional? • Someone who knows what help is available locally? • Does this need to be with someone who knows you well? • Are there any other outcomes that are missing?
Three groups • Each group to look at two outcomes • Record your views in a table • Record the discussion • No time for feedback on this today but we’ll pick it up at the next meeting
Feeling well informed & knowing where to get help & advice Outcome Example of service/intervention Contributing to decision making Advocacy Considering & documenting wishes and preferences Advance care planning Feeling adjusted to the diagnosis Post diagnostic counselling Group psychotherapy Feeling adequately informed Dementia Advisor Post diagnostic courses Memory/dementia cafes Drop-ins Telephone helplines Online resources, forums & courses Welfare benefits advice
Carer wellbeing & support Outcome Example of service/intervention Being equipped to cope with caring Post diagnostic carer courses Carer groups Behavioural interventions Feeling supported emotionally Telephone helplines Online resources or forums Carer groups Carer counselling Carer assessment Having a break from caring Day centres Overnight breaks Supported holidays Optimising relationships between carer, person with Couples or family therapy dementia & other family
Optimising physical health (part 1) Outcomes Example of service/intervention Optimising medication Medication review Maximising mobility Physiotherapy Falls clinic Exercise classes Reablement Optimising nutrition & hydration Carer education Dietitian Speech & language therapist Home care Luncheon clubs Managing pain & discomfort Use of pain scales Dental care Palliative care team
Optimising physical health (part 2) Outcomes Example of service/intervention Compensating for sensory loss Optician Private providers (Boots, Specsavers) Ear, nose and throat specialists Sensory impairment team Avoiding unnecessary hospitalisation Community matron Discharge team Hospital liaison team Care coordinator Advance care planning Ensuring person is clean & comfortable Home care Extra care housing Adaptations/equipment Care homes Optimising end of life care Palliative care team Hospices
Doing enjoyable activities & feeling connected to people Outcome Example of service/intervention Pursuing existing interests & exploring new options Individual support (e.g. community support worker) Cognitive rehabilitation Having access to meaningful day opportunities Local activity groups (e.g. walking group) Day centres Creative arts therapies Animal assisted therapy Having opportunities to influence & contribute to Local user groups service development and/or research Join Dementia Research Research networks VOICE
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