Evaluation of the Life Changes Trust peer support programme

Peer Support

The Life Changes Trust funds five peer support initiatives across Scotland. This funding came about because peer support is something which people living with dementia and unpaid carers say they most value because of the positive impact it has on the person with dementia and unpaid carers. Peer support can help keep people more socially connected, giving them confidence and motivation to participate in their communities. It can also help them to feel valued by being listened to and being able to help others with similar experiences. Peer support builds on the skills and knowledge that already exist in the community. Each project was given five years funding in 2015.

Evaluation Overview

This evaluation, conducted by The University of Stirling, has the following aims and objectives:

  • to determine how peer support benefits both individuals and society
  • to explore what constitutes good practice when delivering peer support
  • to share evidence to promote greater awareness about the benefits of peer support and what works for effective peer support

Researchers at The University of Stirling have reviewed self-evaluation data provided by the five projects, funded by the Life Changes Trust, who deliver peer support.  They are also conducting new research at four of these projects to engage staff, volunteers, people receiving support and partner organisations.

Initial Findings

Peer support enables people with dementia and unpaid carers to live better lives and remain socially connected.  A video has been created to highlight the different ways in which unpaid carers and people with dementia benefit from this social connection – watch it here.  Social connection is layered.  Attending peer support groups helps to build new relationships.

Contributing in these groups builds confidence and helps people to be involved.  Sometimes this involvement extends outside of the peer support group.  Fuller participation and sense of involvement comes from sharing responsibilities and helping to sustain the group.

 Next Stages

In the coming months, we will be investigating these and other benefits through conversations and discussions with people living with dementia and unpaid carers who access the peer support projects.  We are also meeting with staff and volunteers at the projects and staff from partner organisations who have worked with the projects.

This research will enable us to find out how people experience the support and understand what works well, or less well, for them. We want to learn lessons about ‘what works’ and share this information so that peer support can be as successful as possible for people with dementia and unpaid carers in the future.

Participatory Methods

The method adopted by the evaluation has been to recruit several ‘Community Researchers’ who would carry out the fieldwork in conjunction with academic staff at The University of Stirling.  These volunteers were recruited from within the dementia community, being carers or individuals who had some connection to dementia.

Recruitment has not been an easy task, especially retention of volunteers who are actively involved in caring for a person living with dementia.  More will be said about this later.  A range of skills was sought and achieved.  Several of the volunteers were trained researchers who had been involved in previous projects about dementia at The University of Stirling and have skills necessary to carry out the fieldwork.  Others were already volunteering in a dementia-related project and were committed to helping where they could in researching the condition and how life could be improved for those living with dementia.

Each brought with them life skills from previous employment and volunteering such as communication skills, project skills and creative skills.

An initial introductory meeting was arranged and then a follow up meeting, where volunteers gained some knowledge of the project objectives and methods.  Initially there was a high level of commitment but, due to caring commitments and the pandemic which hit in March 2020, there was a level of drop off, particularly among volunteers actively involved in caring.

Fieldwork and the Pandemic

Four projects supported by the Life Changes Trust have been identified for fieldwork.  There was much discussion among the researchers about which creative methods were best to evaluate the effectiveness of peer support in each of the projects and many face-to-face, group and socially inclusive methods were identified.

All of these face-to-face methods were excluded due to self-distancing rules introduced in March 2020.  The project has carried on, however, with researchers meeting online and continuing to identify methods now based on online techniques that can be conducted safely at a distance. (See ‘Lessons Learned’)

A personal observation here was how the project reacted to the pandemic.  What was essentially a project about connection with dementia projects and creative methods for evaluating them became, due to the pandemic, an exercise in remote working both among the volunteers and with the projects.  Essentially the evaluation project did not change but has become different in its methods of engaging people in research.  In addition, we learned a lot about setting up projects like this and making them more robust against unforeseen risk.

Lessons Learned (so far):

(1) It is important to be mindful of existing commitments that community researchers may have at the recruitment stage. This is particularly true where potential researchers are interested in a subject like dementia as a result of personal experience of living with or caring for someone with dementia.  Where a potential researcher does have caring responsibilities or a long term health condition, they must be actively supported to engage with the research in a way that works for them.  Ultimately, though, they may feel they have to step away from the project.

(2) There are lots of creative, non-contact methods available for engaging people at a distance which are available and published on sites such as org. We were particularly impressed with a video by artist Lydia Beilby called “Create Your Own Living Archive” https://www.youtube.com/watch?v=U2Zt-tYC-V8.  The techniques described in the video can be adapted to evaluate peer support within projects using such creative methods.

(3) A risk register can never be too detailed or “out of the box”. We missed the possibility of a pandemic but, at the time the project started, if we had considered it we would have rated the probability very low and impact extremely high and, I am sure, we would have decided to live with the risk.  As it happened, a flexible approach to project methodology has allowed us to react to the pandemic and create new methods to carry on with the project.

(4) One of the major lessons learned is “learn the lessons”. Many of the new methods developed out of necessity will be useful in future research and will be written up, developed and used in future studies regardless of the situation.  We also hope that the methods we use for engaging research participants online will be useful longer-term for the peer support projects who may find the creative resources adopted in the evaluation useful for supporting and delivering peer support at a distance.

Final Thoughts

Carrying out an evaluation during the pandemic will allow us to gather unique insights about the role of peer support and factors influencing its delivery during a period of acute crisis, what this may mean for peer support, and its effect regarding loneliness and social isolation.

Author Information

Dr Paul Lyden is a retired IT consultant and Project Manager.  He became involved with dementia when his oldest friend was diagnosed with the condition.  Paul volunteered with Alzheimer Scotland at an allotment in Dumbarton as he is a keen gardener.  He still works at the allotment (pandemic permitting).  Paul has a background in research and is keen to get involved in research which might help.  He is volunteering as a Community Researcher.

Contact Information

Dr Jane Robertson, Lecturer in Dementia Studies in the Faculty of Social Sciences at The University of Stirling, is leading this project. For further information about the evaluation, please contact Jane at j.m.robertson@stir.ac.uk

 

Dementia, human rights and COVID-19

For the past six years, the Life Changes Trust has worked with people with dementia, unpaid carers, organisations and individuals to promote a whole life approach to dementia. A ‘whole life approach’ means looking more closely at all the different aspects of a person’s life that are important to them and doing everything that can be done to ensure these do not disappear with a diagnosis of dementia.

We have also advocated for a stronger human rights-based approach to dementia, that puts flesh on the legal and policy framework in Scotland in order to bring it to life. We are pushing the boundaries of the human rights-based approach so that people with dementia and unpaid carers can clearly see their rights being fulfilled in practice.

On 22 June 2020 we will publish a suite of documents entitled ‘Dementia: A Whole Life Approach’. This is a resource for anyone looking to learn more about dementia, human rights and community. It features the work of many organisations across Scotland and will, we trust, inspire more good work.

A key feature of our approach has been reframing discussion and language about dementia. We have emphasised the fact that people with dementia are citizens and rights holders, not just patients or service users. When the Life Changes Trust was first established, a medical model of dementia was still predominant and people were exploring more actively what a social model of dementia should look like.

In 2015, the Trust funded a series of workshops with the Joseph Rowntree Foundation which became known as the VERDe Network. This network was fundamental to the development of the DEEP (Dementia Engagement and Empowerment Network) in the UK. As people with dementia met and spoke together they agreed that they wanted to live hopefully, be treated well and with respect regardless of age or ability, be able to give and receive support, and participate as fully as possible in their community.

Since then we have seen many of these hopes become reality for thousands of people living with dementia across Scotland. We commissioned independent evaluation of the impact of work funded by the Trust and will provide multiple opportunities over the next few years for people to share in that learning.

Then, in spring of this year, there was COVID-19.

The dementia ‘world’ has been significantly impacted by the pandemic, and will continue to be so for a long time to come. On the one hand it has been astounding to see how quickly communities and many organisations have adapted to meet needs, nurture relationships and provide support in new ways.

On the other, some of the media narrative around people with dementia and COVID-19 threatens to take us back to a medical model that focuses on the condition more than the person, labelling people living with dementia (and older people) as ‘the vulnerable’ regardless of the state of their general health.

We understand why the government has restricted some of our human rights, e.g. right to liberty and right to respect for private and family life. It is clear that these are for reasons of public safety and to secure the right to life.

There is, however, some real apprehension about what the longer term will hold for people with dementia and unpaid carers as we work through the phases of easing lockdown restrictions. For some there is a fear that they will be labelled ‘the vulnerable’ and treated differently from the rest of the adult population.

What can we do to address some of these fears?

Be careful with the language we use

We have become familiar with phrases such as ‘protecting the vulnerable’. When we talk about ‘the vulnerable’ or ‘the elderly’ or ‘the disabled’ we are treading on dangerous ground because we risk stereotyping and making assumptions. This can be disempowering and may unwittingly create distinctions that are unhelpful: the vulnerable and the strong; the protected and the protector; those who sacrifice and those who are saved.

The reality is that, while there are some people who may be more vulnerable to the effects of COVID-19, any one of us could find ourselves in a position of vulnerability due to the virus. Therefore, it is better to use language that talks about the collective steps we are taking to protect our community from the impact of COVID-19. This language is more inclusive and frames the conversation in a different way. It makes COVID-19 a community matter rather than a problem for some more than others.

Restrict human rights only where absolutely necessary

There is a reason why the European Convention on Human Rights protects respect for private and family life. Personal identity, friendships and family can help anchor us. If our ability to access these aspects of life in a meaningful way is disrupted for too long – even for the best of reasons – our perception of self and our abilities can be severely affected.

It is encouraging to see that the Scottish Government has been using the phrase ‘physical distancing’ as opposed to ‘social distancing’. If anything, COVID-19 has increased the need for social connection and this has been borne out by the number of people who have contacted helplines run by organisations such as Age Scotland and Alzheimer Scotland.

One common theme in all of the work funded by the Life Changes Trust is the importance of relationships for people with dementia and unpaid carers. Relationships help restore lost identity, recognise shared humanity and create the conditions needed for a person to thrive. People with dementia and unpaid carers have a right to these relationships and as we move into the next phases of easing restrictions we must do four things. We must:

  1. listen to what people with dementia and carers are telling us about how they are feeling;
  2. listen to their suggestions and proposed solutions;
  3. after listening, fully consider and implement ways of working around necessary restrictions or requirements;
  4. challenge unnecessary restrictions or requirements.

Focus on enablement more than risk

Enablement and risk management are two sides of the same coin.  However, people with dementia and unpaid carers need us to focus more on enablement or, in some cases, reablement. We are seeing first hand the effects of lockdown on people with dementia who are usually out and about and involved in dementia activism. They are noticing the difference themselves and are concerned that their dementia is becoming worse. They are afraid that their confidence has gone and will not return.

An enabling rights-based approach says ‘you have a right to quality of life and deserve to do more than merely exist before, during and after COVID-19’. There are many initiatives across Scotland doing just that. They are helping people with dementia and carers navigate the restrictions of COVID-19 by teaching them to master online meeting spaces; providing telephone befriending and opportunities for peer support; sending (and receiving) handwritten letters; delivering arts and craft materials; chatting at a distance through the window; creating safe opportunities for singing or reminiscing or taking part in virtual walks; or starting each day with dementia-friendly exercises.

 

 

 

 

 

 

 

 

A number of project leaders that we have spoken with say that COVID-19 is increasing the variety of ways that people with dementia can be engaged and enabled. Their work is growing and developing rather than shrinking during lockdown. This is particularly the case where communities are pooling their resources and working together in new ways.

 We must make time to reflect and learn from COVID-19

COVID-19 is providing us with an opportunity to test how strong the roots of our human rights-based approach to dementia in Scotland actually are. After all, trees need strong winds to help them mature and grow stronger.

We have seen some excellent examples of rights-based practice in action, and also some examples of rights being set to one side in the name of expediency. This is a real opportunity for learning and growth, which occurs at a good time when the Scottish Government is looking at refreshing its National Dementia Strategy and a number of local dementia strategies are being drafted by Integration Joint Boards.

A number of the evaluation reports for Life Changes Trust funded projects will now also examine how projects, people with dementia and unpaid carers were affected by, and responded to, COVID-19.

As we all gather the valuable evidence we have and reflect upon it, we will be in a position to share learning and strengthen our human rights-based approach in Scotland for the future. It is unlikely we will have an opportunity like this again in our lifetime.

 

 

 

 

Anna Buchanan, CEO, Life Changes Trust