How to ensure effective patient public involvement: striving towards true collaboration in designing dementia care training

Clare Mason has recently been appointed the position of Experts by experience lead (patient and public involvement lead of people with dementia and their family) at the Centre for Applied Dementia Studies. Clare is a Dementia Care trainer with a wealth of experience, having worked as a practitioner in a variety of roles in dementia care. She tells us about involving people with dementia and their families in creating dementia care training.

Striving towards true patient public involvement

At the Centre for Applied Dementia Studies, we continually strive towards ensuring the work we do is driven by the needs and wants of people living with dementia and their families.

Many people who take part in our Experts by Experience panel and associated work have told us that involvement is about ‘giving something back’ and ‘keeping busy’. However it is vitally important that work with those who have a lived experience of dementia are not used as a ‘tick box’ exercise or as a tokenistic gesture in a nod to involvement. Collaboration needs to be just that, a joint venture where both parties are in control, both have a say on how it is done and what the outcomes will be.

Ways in which we might ensure effective involvement in training are through:

Widening participation through digital technology,

Making sure those that are involved are informed about what is happening to their information,

And gaining further feedback on the finished product.

Such an approach to collaboration was taken in our Supporting Families of People Living with Dementia training module.

Supporting Families of People Living with Dementia training module: An example of true collaboration

In the recent development of our Supporting Families of People Living with Dementia training module, we wanted to develop new training materials based on the perspectives of those affected by a dementia diagnosis.

To gather the views of stakeholders, a call was put out through various channels for people who would be interested in sharing their views and experiences with us.  Although the response was overwhelming, not all those who replied were able to provide their views and opinions in person. Eight people attended a focus group in person including two past carers, three people with dementia and three present carers allowing a wide range of views and ideas to be collected. Some people living in care homes or those providing full time support for family members were not able to attend.  To ensure we captured all the views of respondents, we enabled people to respond in person as well as by email, telephone, post, and through both public and private groups on social media.

One person responded by email, stating

‘I can’t stress enough to care/hospital staff that the time frame leading up to someone arriving in the care home where they work has often been a very lengthy, distressing time with much soul searching, anxiety and tears.  The partner/carer  has usually been the other person’s ‘prop’ or lifeline and they’d be fearful when they’re not there.’

Photo by Ana Barbosa

Another piece of feedback received on Twitter said

‘Dementia affects whole family – in order for the best care of the PWD [person living with dementia] to happen family/friend need to feel confident that their insights and experiences of PWD are valued and affirmed.’

Embracing modern technology such as connecting with people through social media has been a great way of gaining views.  We connect with people with dementia, family, professional carers and academics on Twitter and Facebook. Through this approach we gain almost instant, first hand responses to questions and trending topics in the dementia care field.  This has enhanced and opened up our dialogue with people in a truly collaborative way.

The Dementia Engagement and Empowerment Project (DEEP) (2013), a group which brings together people with dementia across the UK, has guidance on gaining views from people with dementia. The guidance highlights that people should be informed what will happen to the information gathered. We followed this guidance, showing our training materials to the group. Outcomes were also fed back via various methods including Twitter and Facebook.

We also ensure that those involved are able to comment on the final training materials. When the training module is completed, we plan to hold a further focus group to show members a draft copy of the finished materials and gain further feedback before they go to print.

Future research might focus on involving people with dementia and their family in creating training in addition to research. There is growing evidence of the benefits of patient and public involvement in research.  Brett et al (2014) for example, describe the benefits of involvement as far outweighing the challenges.  The suggested benefits are gaining new skills and knowledge, personal development, peer support and friendship, enjoyment, satisfaction and financial reward.  The negative impact, seems to be underreported,  is also mentioned by Brett et al. (2014) to be that people can feel emotionally burdened, overwhelmed with work, distressed by unwanted media exposure or frustrated at the limitations of involvement. However, less evidence is available around the involvement of Experts by Experience in the development of training materials.



Brett, J., Staniszewska, S., Mockford, C., Herron‐Marx, S., Hughes, J., Tysall, C. and Suleman, R. (2014) Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expectations 17 (5), 637-650.

The Dementia Engagement and Empowerment Project (DEEP). (2013) Collecting the views of people with dementia. DEEP Accessed online at: