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Investing in People Who Have Early Onset Dementia and Their Families

Partners in Policymaking is renowned and internationally respected. Lynne Elwell, who brought the course to the UK in 1996, has continued to develop programmes for over 20 years. This year brought a new growth in the Partners network with a course specifically designed for people who are living with Dementia and their families.

Lynne Elwell and Julie Stansfield led the new programme, 'Shifting the Pattern', in Hartlepool. 'Shifting the Pattern' aimed to equip people who have early onset dementia, their spouses, families and people who support them with the knowledge, information, confidence and competence needed to plan.

Lynne said: 'We believe that the people who need support and those who love and support them are the true experts on what they want and need to have a great life. Shifting the Pattern will give the participants the information and skills needed. We will explore what is important to people who have dementia or support someone they love with dementia. We will look at best practice around the country and we share a good understanding of Person-Centred Planning, self-directed support and support planning, including advance directives and living wills, so that people can plan themselves rather than be planned for by others who might not know the person.'

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As you'd expect, the course was a great success with good lessons learnt for future courses. Julie Stansfield, who presented and supported on the programme and led the evaluation, said:

'It is great that local authorities and CCGs are investing directly in people. This programme not only made a key difference to families who are living with dementia, but also invests in the local groups, communities and voluntary organisations coming together. It also raised some strategic issues and solutions for the commissioners to consider, such as the increasing percentage of male carers needing different advice and support to sustain becoming a carer for their wife, and levels and context of information giving at initial diagnosis via the GP.

Thanks to Hartlepool Council, as ever, leading the innovation, The Alzheimer's society and some amazing speakers offering their expertise and support to the programme, and Lynne creating the culture where people feel safe to learn, share and plan for better futures.'

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Here is what course participants had to say:

'It's really helped us understand what bits we can get on and do ourselves and what bits we might need to rely on professionals or health to do.'

'The more knowledge you can get you can face the future and move forward with confidence.'

'To those funding it, the help given in the community by family carers will more than make up for the cost of having sufferers looked after by the health services.'

'Knowing we are not alone. Meeting others and finding out good information and talking about what it means in practice. Thoroughly enjoyed all of it.'

'It's delivered in such a relaxed way. People come and gain a network.'

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Asked what they would say to others considering taking part in a future course, participants said:

'Do it, it's really valuable. It give you good info and links. I know where to go and who to go to and know how it all works.'

'Go on it. It's necessary you get the education, it's helpful and gives you confidence.'

'It really helped us get to grips with things we wasn't even sure we needed to! Gives us a way of keeping some control within the chaos.'

Find out more about the Partners in Policymaking programme of courses by following the link below.

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Last Updated : 23 February 2017. Page Author: philippa.barker.