Written by Helen Sanderson, CEO of Helen Sanderson Associates
I recently wrote a book with Gill Bailey called Personalisation and Dementia. It shares the lives and journeys of people and their families whom we have directly worked with over the last five years. As well as our work as person-centred thinking practitioners, Gill is a carer for her aunt who has dementia and I am a volunteer at a home for people living with dementia.
Sharing these stories, with people’s permission, and recording quotes is the closest that we could come to hearing from people who live with dementia. Along this journey we have captured some rich insights and have been able to see, first-hand, the differences that were made to the way individuals live their life and directed their own support through using person-centred thinking tools. We are of course still exploring, trying and learning about how to ensure that people with dementia have the lifestyle and support that they deserve and writing for this blog is one of the ways we hope to record this learning.
The number of people that experience and are affected by dementia is growing rapidly. In fact just this week David Cameron has called a G8 Summit to discuss with other world leaders how collectively we should be addressing the growing demand there will be on health and social care services, families and communities in the future. I strongly believe that good support for people with dementia lies firmly in the personalisation of dementia support. Staying focused on people with dementia not just in their community, but making a contribution to community and civic life, is an area that is crucially important for all of us. There is so much more to learn about how to make this a reality but our journey starts by looking at how person-centred practices can be used to create a new relationship between the person with dementia and paid staff and designing services and supports that meet the specific needs of individuals.
Having researched and written our book, Gill and I found that we could summarise 9 person-centred practices to deliver good support for people with dementia into one eBook. This could then can be used as a practical guide for anyone looking to personalise dementia support. You can download the eBook for free from the resources page of this blog site. In brief here are the 9 person-centred thinking practices we discuss and why we believe they should be used with people living with dementia:
- One-Page profiles: Personalisation starts with the person; knowing who they are what matters to them and how they want to be supported. A one-page profile is the foundation of personalisation.
- Communication charts: Personalisation means making sure that the person has as much choice and control in their lives as possible. The communication chart is a powerful way to record how someone communicates, with words and behaviour. Often behaviour that is described as ‘challenging’ is a result of staff not understanding what people are trying to communicate.
- Decision making agreements: How people make decisions, and how often, is related both to their ability (mental capacity) and their opportunities to make decisions. Mental capacity simply means the ability of an individual to make their own decisions. Many people living with dementia may lack the capacity to make big decisions, such as where they live, but are often able to make day to day decisions such as what to wear or who to sit with.
- Person-centred reviews: an informal meeting that looks at what is working and not working in the person’s life from different perspective to get the full picture.
- Individual time and matching staff: Truly personalised support means people choose how they spend their time and who they spend it with.
- Learning logs: These are what we use to learn how to make changes to better support a person.
- Developing a group activity: Using one-page profiles to develop group activities based on shared interest and hobbies.
- One-page profiles and volunteers: Extending friendships and relationships through dementia friends, volunteers, local businesses, faith communities, time-banks and Community Circles.
- Working Together for Change: Following 8 steps to achieve and learn from real change.
Read the eBook in full here.