Q Exchange
Co-design of an early intervention in dementia
- Proposal
- 2019
Meet the team
Also:
- Elaine Hunter, National AHP Consultant, Alzheimer Scotland
- Professor Maggie Nicol, Chair of Alzheimer Scotland AHP Dementia Forum
What is the challenge your project is going to address and how does it connect to your chosen theme?
There are 850,000 people with dementia in the UK, with numbers set to rise to over 1 million by 2025 (Alzheimer Society). There is an increasing evidence base on the benefits of AHP early interventions on helping people to live well with dementia but the challenge is ensuring equitable access (Alzheimer Scotland, 2017). One answer to this is implementation of an evidence based Occupational Therapy Home Based Memory Rehabilitation (HBMR) improvement project in Scotland. Successful outcomes e.g. maintenance of skills have been demonstrated for people living with early dementia. However there continues to be challenges around access to the intervention due to waiting lists and capacity to deliver sessions (around 6 – 10 home visits) at optimum timescale (especially remote and rural areas). The impact on the person is that they are having to wait for rehabilitation which can negatively affect quality of life, confidence to engage in local communities and support for carers.
What does your project aim to achieve?
The aim is to work in partnership with people living with dementia (plwd) to explore and design technological solutions (e.g. NHS Attend Anywhere/Amazon devices/online resources) for delivery and reinforcement of HBMR.
We will focus on one rural area in Scotland where there are waiting lists and the Service has demonstrated readiness for change.
The improvement will be increased capacity within the system allowing earlier access for rehabilitation and increased capability for reinforcement of learning, which would derive the maximum rehabilitative benefit of HBMR.
Improvement methodology will be utilised, continuing to measure impact of HBMR, quality of life for person and carer and therapist experience. Additional measures would capture what was enhanced (or not) around using technology (person, carer, therapist, system) e.g. satisfaction and ease of use. Travel (time, cost, environmental impact) vs time required for technology implementation and impact on waiting lists.
How will the project be delivered?
Quality improvement methodology will be utilised. We have strong relationships with the Scottish Dementia Working Group and National Dementia Carers Action Network who will be on a national expert advisory panel, including our Technology Team. We will work with the local Alzheimer Scotland Team to identify plwd willing to participate. Occupational Therapists delivering HBMR will be key partners working with their local post diagnostic team.
To ensure true co-design, we will integrate the Dementia Experience Toolkit in practice (Alzheimer’s Society, 2019). We will link with the wider implementation of Scotland’s technology strategy, connecting with Q members.
We are confident utilising technology will support HBMR but the risk is ensuring the right balance between face to face sessions and technological solutions. We need to make sure that whatever is designed, has the same positive impact as the current programme.
Scale and spread potential will be considered throughout.
What and how is your project going to share learning throughout?
There is growing interest in the HBMR project with initial collaborations across the UK and internationally, this learning would be a shared as a valuable contribution.
The learning from this project has implications for other rehabilitative early interventions in dementia. Members of the Project Team host and chair the Alzheimer Scotland AHP Dementia Forum (this group has representation from every Health Board in Scotland, AHP professional bodies, improvement teams, Q members and NHS Education for Scotland). We would ensure that the project is a standing agenda item. We would also continue to share learning more widely via our active social media presence, our blogs and webinars. We would disseminate the learning at national and international conferences and publish in professional journals.
As far as we are aware, the technological solutions we are looking to co-design are a relatively new area in dementia and the learning will be useful for the Q Community and the wider system.
How you can contribute
- We would value any questions around our idea in order to help us refine it
- We would appreciate any ideas or advice in ensuring true co-design when working with people living with dementia and unpaid carers
Plan timeline
| 1 Jul 2019 | Deepen understanding of co-design in dementia |
|---|---|
| 1 Jan 2020 | Develop project team |
| 1 Jan 2020 | Establish expert advisory group |
| 20 Jan 2020 | Collaboratively agree project plan |
| 1 Feb 2020 | Identify people living with dementia willing to participate |
| 1 Feb 2020 | Scope available technology and procure for testing |
| 1 Mar 2020 | Participatory co-design (workshops and individualised) |
| 1 Apr 2020 | Training and development of technological solutions |
| 1 May 2020 | Commence PDSA Cycles |
| 1 Sep 2020 | Completion of data collection |
| 1 Nov 2020 | Evaluation completed and sharing of learning |
| 1 Dec 2020 | Spread and sustainability plan finalised |
Comments
Stephen Lithgow 15 Jul 2019
Hi Alison, Jan
Its great to hear you are building on the great work already undertaken around HBMR. This is important in the context of dementia policy in Scotland (and wider) around post diagnosis support and earlier engagement with people with dementia. It also highlights the crucial role of occupational therapy.
From previous experience I would certainly look at technologies which can be easily introduced and used. I agree with your thoughts on additional measures around technology- I think its important to consider the experience of both the person with dementia and OT staff supporting technology. (I'm also thinking of the role of family and friends play in supporting use of technology such as tablets, apps etc). Regarding travel time, could you look at financial benefits as well? This looks like a project which can be scaled up. Good luck.
Alison McKean 20 Jul 2019
Hi Stephen,
Thank you very much for your comments and additional thoughts, really useful to hear about your experiences of introducing technology. We also have close links with the Alzheimer Scotland Technology Team and would look to learning from their QI projects around technology in dementia. As you say, it is important that it works for people living with dementia, their supporters and the OT Staff and we will make sure that we measure this.
Great idea re the financial benefits in relation to travel, will include this too. Having just returned from a motorhome tour of some of Scotland, it really hit home how far people have to travel for appointments! We can definitely look to scaling up due to the committed teams already involved in the current HBMR work.
Please keep in touch if you have any further thoughts.
Many thanks,
Alison
Thomas John Rose 15 Jul 2019
Do you have a formal design process that you will be following? I'm very interested in how service design and re-design, particularly using co- design, is undertaken in the NHS and would like to help in producing a more formal approach to this activity that would be available to all.
Alison McKean 20 Jul 2019
Hi Thomas,
Thank you for your question and apologies for the delay in getting back to you, I have been on holiday. My holiday reading has included the Dementia Experience Toolkit, Co-production for dementia and the Scottish co-production network (which was helpfully highlighted by a twitter contact). We also plan to draw on the expertise of the Scottish Dementia Working Group who have been involved in the design process for numerous projects.
I like your idea of a more formal approach available to all and am passionate about ensuring true co-design. Please let us know if you have any other suggestions it would be useful for us to take a look at or think about.
Many thanks,
Alison
Lynn Flannigan 8 Jul 2019
Dear Alison/Jan,
This sounds like such an exciting initiative and has great potential to improve the experience and outcomes for people living with dementia. As Anna has said it has real potential for scaling if it demonstrates the proposed outcomes. The use of technology for people with dementia is a growing area and this initiative will hopefully help bust the myth that people living with dementia are unable to benefit from the use of technology. I looks like you have considered a good range of measures and your partnership with the Scottish Dementia Working Group and also National Dementia Carers Action Network as well as local users will provide you with a true co-design approach.
I also think there is also real potential in this initiative in the future to consider peer support for people with dementia and their carers. It might also be a useful tool to help identify "when things change" and people require to reengage with support services instead of waiting until crisis.
I look forward to seeing how things progress!
Kind Regards,
Lynn
Alison McKean 10 Jul 2019
Hi Lynn,
Thank you very much for your comments and additional thoughts around the project potential. We know from people living with dementia about the benefits of peer support and this would be really useful to think about during the project. Review points are built in to the HBMR programme but as you say, this project could enable the person to have more control rather than waiting - thank you for highlighting.
The more myths in dementia we can bust the better. One of the key messages we always share around HBMR is that people living with dementia can learn new things!
Please keep in touch if you have any further thoughts.
Many thanks,
Alison
Michelle Miller 8 Jul 2019
Sounds like a really worthwhile project and an opportunity to improve access to support during the post diagnostic period. Good luck!
Alison McKean 10 Jul 2019
Hi Michelle,
Thank you very much for your comment. During the initial HBMR work, we used Emotional Touchpoints to capture the person's experience. Themes emerged around people feeling in control, responsible and having hope for the future, which we know is so important in the post diagnostic period. We envisage this project continuing to build on these themes.
Many thanks,
Alison
Alison McKean 5 Jul 2019
We just wanted to say thank you very much for the ideas and suggested connections via social media, very useful for taking the idea forward!
Anna Burhouse 2 Jul 2019
Hi both, this is a really helpful idea and has great potential for scaling. With that ambition in mind I wondered how you plan to capture data and evaluate your work so that you could make a strong business case for sustainability and spread?
Would love to hear more.
warm wishes
Anna
Alison McKean 3 Jul 2019
Hi Anna,
Thank you very much for your feedback and your question. Currently we utilise a measurement plan and capture cognition, impact of HBMR, quality of life for the person, quality of life for the carer and Therapist experience. We would continue to use this but would also need to look at additional measures around the introduction of technological solutions. We would want to capture what was enhanced (or not) around the experience of using technology (for the person, the therapist and the system). Perhaps measures around person/carer satisfaction and ease of use, also savings in travel time vs time required for technology set up, impact on waiting lists and environmental impact.
We would be delighted to hear any other suggestions around measurement or if anyone could point us in the direction of any tools which may be helpful? Also let us know if you would like to hear about further.
Many thanks,
Alison
Comments are now closed for this post.