Key points:

• A Family Guide to Living Well with Dementia published in March 2023 by Liz Leach-Murphy who has over 25 years’ experience working within health and social care, and her co-author Jayna Patel, is an easy-to-follow and accessible guide to help families and carers gain the knowledge and insight to be able to support a person with dementia live the life they wish.
• The book follows Living a Good Life with dementia – a Practitioner’s Guide which was published in 2021 for professionals and carers to gain knowledge and insight to be able to develop creative ideas for the care and support they want to see.
• Both books promote the idea of asking ‘what is possible?’ when it comes to delivering person-centered, self-directed care, looking beyond traditional service provision and seeking solutions in communities.
• Practical planning tools and communication strategies are illustrated and shared to empower those living with dementia to express their preferences and have the confidence to be in the driving seat of their own care and support.
• Many of the person-centred planning tools and approaches to communication are transferable and work well for those supporting, not just those living with dementia, but others who access health and social care support.

Brenda has always loved arts and crafts. Receiving a dementia diagnosis hasn’t quelled her artistic nature. Understandably, she would like to continue to enjoy her creative pastimes and find others with whom to share this interest. With the help of her daughter, she uses the local library to find an arts and crafts group that meets each Wednesday in the community centre in the next village.

It’s seeing countless people like Brenda and her daughter need solutions that lie outside traditional care provision after working within health and social care for over 25 years, that drove northern England-based social enterprise Imagineer Development UK CIC founder, Liz Leach-Murphy, together with her co-author, Jayna Patel, to write their book A Family Guide to Living Well with Dementia.

Released by Critical Publishing in March 2023, the book centres around recognising that people diagnosed with dementia can still have a fulfilled life they can make the most of – provided those supporting them understand how to make that possible.

Community-based solutions

For instance, wanting to attend the arts and crafts group but reluctant to travel alone, Brenda goes with her daughter for the first few weeks, until she gets to know another member of the group, Enid. As they get acquainted, they learn Enid drives past Brenda’s house on the way to the community centre. After having a chat, Enid starts to give Brenda a lift to the group. As the weeks go by, Brenda gets to know the rest of the group and really enjoys her time there. The group even begin to sell some of their crafts to raise money for a local charity. As Brenda has settled into the group, she now feels comfortable using some of her personal budget she’s entitled to under the Care Act 2014 on a taxi to get there when Enid is unable to attend.

Brenda’s consistency in attending a group she’s passionate about is made possible, in part, thanks to her and her daughter’s awareness of Brenda’s eligibility for a personal budget, which empowers her to experience choice and control over how she’s supported. It’s also made possible by Brenda and her daughter knowing that the answer to directing her own support may lie within their local community rather than conventional services.

Combining policy, legislation, and practical solutions

A Family Guide to Living Well with Dementia is borne out of a gap in the market for a book that presents the links between the health and social care legal context, guidance documents and national dementia strategies with good, actionable practice, approaches, tools, and informed advice to achieve person-centred dementia care and support, with an emphasis on communities.

The result was authors Liz and Jayna publishing Living a Good Life with dementia – a Practitioner’s Guide in 2021 for professionals and carers to gain knowledge and insight to be able to develop creative ideas for the care and support they want to have in place. The guide ends with recommendations for local authorities, social workers, health, and nursing professionals on how practice can be experienced in a more person-centred way.

In contrast, the more recent book is an easy-to-follow, accessible guide to develop families’ and carers’ understanding of how to support a person with dementia live the life they wish. Reflection questions interspersed throughout transform the book from a passive experience for the reader, into one of active introspective thinking of how the values of person-centred self-direction can be made a reality in their lives.

Both books draw on the evolution of practice from over 40 years, learning from the pioneers who developed person-centred planning tools like Circles of Support and Solution Circles, which are outlined in both books through step-by-step guides so they can be easily applied in real-life scenarios. 

Lived experience and Dementia Friendly Communities

Interviews with families and people with lived experience, case studies and time spent with practitioners, social workers and community projects leaders for their view on providing good support with people with dementia and some of the systemic issues they face formed a solid foundation for both books. Detailed research into policy, legislation, and the strategic development to improve the lives of those living with dementia care in wider society is also woven into both guides as is some of the Think Local Act Personal reports on the positive impact personal budgets had on older people.

An examination of how different local areas have implemented Dementia Friendly Communities is included. This includes identifying how dementia championing ideas have been put into practice, illustrated by real-world examples, like Northumberland Dementia Forum initiating a dementia awareness training package for local bus drivers as part of their Certificate of Professional Competency so that those living with dementia who use public transport in rural and urban areas across the UK benefit from having a well-trained and sensitive point of contact in their bus drivers.

Understanding a person by communicating in a way that works for them

A Family Guide to Living Well with Dementia contains information, not only on people’s and carer’s rights within the UK health and social care legislation and the paid and community-based support options available to help people self-direct their own support, but also on behaviour and methods of communication, including practical tools and engaging illustrations to help those living with dementia express themselves and their wishes.

All types of communication are explored, including the idea that sometimes, building an understanding of a person and what matters to them doesn’t always require talking; spending time together, watching and learning can work just as well.

This was the case for Phillip who found it difficult to respond to direct questions and would easily become distracted by things going on around him. The inability to convey what he liked and didn’t like naturally led to feelings of frustration for him. When it was thought all methods of communication had been exhausted, one of his person-centred planning facilitators suggested Philip and his family / carers meet in the local town where he had spent most of his adult life.

The meeting was arranged in a local café that Phillip used to frequent. On the way to the café the person accompanying him noticed how much Philip was looking around, into shop windows and how he seemed to enjoy being back in the town. Philip’s enjoyment was discussed with him in the meeting at the café and Philip decided that, rather than spend a long time in the café, it would be good to revisit some of the places he used to go into on a regular basis, such as the post office, greengrocers, and local shops. So much was learnt on this visit about the friendships Philip had in the area, the shops he really liked, the things he looked for in the shops and the items that captured his attention, all things that could help personalise his future support.

The confidence to explore what is possible

Dementia is devastating for every family. Feeling lost in the sea of health and social jargon and being forced to learn to adapt and do their best in what can often be difficult circumstances adds to the burden.

A Family Guide to Living Well with Dementia serves as a reliable anchor and compass, helping families navigate care and support, know what to expect from professionals and feel prepared for conversations that need to be had. The intended outcome is to help readers weather the storm that health and social care can sometimes be perceived as, placing those living with dementia in a stronger position to be able to self-advocate and be in the driving seat of their own care and support, rather than them depending on being told what’s possible.

Readers will be instilled with the confidence and strength to explore what is possible when it comes to care and support for someone living with dementia to avoid the person dipping into a patient role receiving care, their life diminishing because of how they’re treated.

The hope is for both books to reach a wide audience, provide a positive influence for practice and create a vision of what good support would look like that those supporting people living with dementia can help shape and implement.

Liz Leach-Murphy and Jayna Patel
Authors of:
Living a Good Life with Dementia (2021), Critical Publishing
A Family Guide to Living Well with Dementia (2023), Critical Publishing