The Alzheimer’s Society team in West Sussex recently began using the My Future Care Handbook and training to provide a safe space for people living with dementia and their families to talk about and plan for the future with greater confidence and clarity.
We spoke to Community Dementia Adviser, Katie Rickwood, to find out more.
What kind of support do you provide and who do you provide it to?
Alzheimer’s Society offers a range of dementia support services, from a listening ear on the phone to a visit in person and opportunities to connect with others.
My particular role within the Society is as a Community Dementia Advisor, within the West Sussex Team. I offer support and information to people living with memory issues and dementia, their carers, friends and family. We provide information and support to people both pre and post diagnosis, in a memory clinic setting, via the telephone and at home.
What kind of challenges do the people you work with face when it comes to making plans for later life and beyond?
Receiving a diagnosis of dementia can be challenging for both the person directly affected and their family and friends. If plans are not already in place, the topic of future planning can be confronting and uncomfortable to discuss.
For everyone, thinking about health issues and death can be a difficult subject to consider and take action on, however, memory loss, capacity and denial can all become real stumbling blocks when deciding on plans, legal and financial matters.
In some cases, it is the care givers who are having to make the decisions on behalf of the person living with dementia, which can feel like a great responsibility. Capacity and choice must always be considered and supported.
How do you hope the My Future Care Handbooks and support will help you meet people’s needs better?
The Handbook is an excellent tool to use, especially as a conversation starter. I have taken it to our Carer’s Peer Support groups around West Sussex and facilitated group discussions around the topics and ‘to do’ lists.
Using the Handbook in this way has enabled carers and family to gain an understanding as to what to expect, to explore their own wishes and feelings and most importantly where to find information. These sessions have provided a safe space to explore future planning in an informal setting, promoting discussion and peer support.
Our service users have responded very positively to the sessions and have gone on to use the free Handbooks that were provided.
I also use the Handbook when advising individuals via the telephone, I signpost to the My Future Care website and we discuss what future planning entails. Again, service users have appreciated the support and feel more confident to get things in place.
Feeling motivated by Katie’s insights? Could you incorporate future care planning support into your group or service?
Take advantage of our free training and ongoing support programme. Our online training will equip your team to help the people you work with make an action plan and see it through, using the My Future Care Handbook as a source of information and structure for the conversation. Handbooks are available free in certain areas (thanks to area-specific funding), otherwise bulk prices are available.
