In this article, we highlight the later life planning support provided by Mandy Blair and the team at Dementia Oxfordshire.

Mandy tells us how the challenges of people who receive a diagnosis of Young Onset Dementia in their 50s and 60s are significantly different to the challenges facing older people with dementia.

Let’s see what she has to say:

What kind of support do you provide, Mandy?

We are a support service for people in Oxfordshire living with Young Onset Dementia and their family members. We are one of the few dementia services offering age-appropriate support for people under 65. We offer face-to-face, telephone and email support for people at every stage of their dementia journey from diagnosis through to bereavement support for
family members. Our team of three currently supports around 300 people – around 130 are living with young onset dementia and the rest are family members.

What kind of challenges do the people you support face when it comes to making plans for later life and beyond?

The challenges facing people who receive a dementia diagnosis in their 50s or 60s are significantly different to the challenges facing older people and their support and planning needs are often far more complex.

People in their 50s may still be working, they may have greater financial commitments, they may be carers themselves for children or older family members, they are probably still driving and can be physically fit and well. All of these factors mean that a diagnosis of dementia can have a hugely disruptive impact on a younger person’s life (and the lives of people around them) and this makes it very hard to adapt to – let alone plan around.

These difficulties are often compounded by the fact that age-appropriate support is not always available.

Taking all this into consideration, one of the first and biggest challenges to making later life and future care plans is helping a person find a sense of acceptance and the balance they need to be able to look ahead.

How do you hope the My Future Care Handbook and support will help you meet people’s needs better?

The My Future Care Handbook creates the opportunity to open up conversations. It is well structured and the information is all in one place. The bite-sized chunks of information make it possible for people to dip in and out as and when they are ready to deal with a topic.

It is a good resource for people living with dementia because it is accessible and well-written in plain English. It is also helpful for people to refer back to in between conversations and refresh their understanding as often as they need to.

We also find it a useful tool for working with family members. We use it as an opportunity to engage with them too and to bring the whole family together to discuss key topics.

We have used the Handbook with small online groups and in individual support sessions. We found that generally speaking, family members are able to engage in a group situation but that people living with dementia tend to benefit from face-to-face support.

We frame the Handbook as an opportunity for people to look ahead, express their wishes and make a plan while they have the capacity to do so – and then “park it” so that they can get on with doing what is important to them right now.

We find the Handbook to be a fabulous resource to get people talking and help overcome people’s natural reluctance to think about the end of life, death and dying.

Feeling motivated by Mandy’s insights? Would you like to upskill yourself or people in your group to support people in making plans for later and future care?

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.

Request further information.

Recommended Posts