Living Well with Dementia

Author: Liz Leach Murphy

Liz Leach Murphy has co-authored 2 guides to living well with Dementia and both are focused on showing that people diagnosed with dementia can continue to live full lives after a diagnosis. In this article Liz gives some background to her research and shares key findings from her work.

The idea for the books first sparked in 2016 when I was involved in delivering a conference on person-centred practice in Dementia Care. Whilst talking to other speakers at the conference, I identified the difference between the person-centred approach, established through Tom Kitwood's work, and the approach set out by the person-centred planning community and its founders.

The person-centred approach developed a focus on improving the care environment for those living within it, with a focus on improving the interaction between caregivers and care recipients. Whereas person-centred planning places emphasis on the person being at the centre of all decisions about their life; about life in community and self determination.

It quickly became clear that what we had learnt through years of delivering person-centred planning had the potential to add value within Dementia Care and Support.

My commitment started when one of the co-presenters at the Dementia conference asked if I would be interested in writing a book on the topic. I saw this as an opportunity to draw on the learning I had gained with people I had worked alongside who had been diagnosed with Dementia, covering what we did together to ensure that their life continued to be one they felt in control of and one with purpose and meaning.

This led to me conducting further research surrounding Tom Kitwood's work as well as the work conducted by his predecessors Dawn Brooker and Mike Nolan. I also spent time with people living with Dementia, their families and their voluntary and paid supporters. This was an opportunity to hear first hand what life was like for people and the support they had access to.

Through these conversations I discovered that:

• People had been given little or no information about how to access social care and health support
• People were unclear about their rights as determined by legislation and local policy
• Carer exhaustion was widespread and added to the strain within families

In the development of the books there were a number of areas that stood out:

1. The values of inclusion and person-centred planning are complementary to the developments within Dementia Care, however it brings an emphasis of an approach embedded in the Social Model whereas all other developments up to this point have been rooted in the Medical Model.
2. The Dementia Friendly communities initiative is global with great examples of how communities have mobilised to create inclusion where people with Dementia can continue to live safely and well within their community; some examples of these are shared in the book.
3. The uptake in the option for Direct Payments has declined for older people over recent years with no clearly documented reason why. However, the research I conducted demonstrates: that people had not been made aware of the option and that: for people who had been made aware, the option had been presented in a restrictive manner (eg a Direct Payment can only be used for paying PAs a set amount and the responsibility that would accompany this i.e. payroll, recruitment, supervising).
4. Most importantly those who had been diagnosed with Dementia often reported the sensation of suddenly feeling invisible, where their thoughts and ideas were often overlooked and at worst they were no longer at the centre of conversations and decisions that would affect their life. The content of the book is largely focused on addressing this issue.
5. To create change we need to be the change: be prepared to ask the good and rich questions that lead to an insight into what would make a difference. And, be prepared to be the one who encourages people who have an influence to see things differently.

Our research for the books led us to make the following suggestions:

1. Create the conditions for people living with dementia to be able to design the care and support around them in a manner that upholds their wishes and preferences. This creates the opportunity for people to continue to lead a life that has meaning and purpose; drawing on the relationships that matter, the skills and interests to share with others and the gifts the person has to give to their community.
2. Place relationship building at the heart of care and support, whether this is from the family or paid support. To build relationships requires people to build understanding and this can be achieved through good approaches to communication.
3. Think beyond services when considering sources of care and support.
4. Have a holistic view of the resources available; statutory, community and natural, applying all of these as led by the person living with dementia.
5. Share in what avenues available to you the difference made by taking a different approach and one that places the person living with Dementia in the driving seat of their own lives.

Both guides are published by Critical Publishing and co-authored by Liz Leach Murphy and Jayna Patel.

A Family Guide to Living Well with Dementia (2023) is available to buy at: https://www.criticalpublishing.com/a-family-guide-to-living-well-with-dementia

Living a Good Life with dementia – a practitioner’s guide (2021) Is available to buy at: https://www.criticalpublishing.com/living-a-good-life-with-dementia

The publisher is Citizen Network Research. Living Well with Dementia © Liz Leach Murphy 2024.