Coping with dementia: a practical DVD for carers

'Coping with dementia: a practical DVD for carers' is a resource to help carers learn from other carers’ experiences. It provides practical suggestions including advice on challenging behaviour, money, legal matters and bereavement. It owes its success to engaging people at the heart of the experience.

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How it started

In 2009 NHS Scotland, in partnership with Alzheimer Scotland, wanted to provide information on dementia to carers in an accessible format to complement an existing handbook ‘Coping with dementia – A practical handbook for carers’.

The handbook, though successful, lacked accessibility. It was agreed to produce a DVD to personalise and bring alive the book’s subject matter and make it more accessible to Scotland’s diverse population. A key feature of the DVD was that it was to be developed in collaboration with carers from a range of backgrounds, ethnic groups and ages.

Partners

A project advisory group was established for consultation on the development of the DVD:

  • NHS Health Scotland
  • Alzheimer Scotland
  • Dementia Services Development Centre (DSDC)
  • NHS Lothian (Minority Ethnic Health Inclusion Project)
  • VOCAL (The Voice of Carers Across Lothian) carers’ centre.

Process

Vikki Hilton, an independent facilitator, was commissioned to bring the right people together:

'An Equality and Diversity Impact Assessment was undertaken in March 2010 to ensure the diversity of Scotland’s population was reached. We then held a workshop of stakeholders and carers to advise on the content of the DVD. Over 70 to 80 participants were involved in the first workshop where people were able to share their stories and the producers of the video, 20:20, were able to get a feel for the content.'

A second workshop, again with 70-80 participants, followed the filming to provide feedback on the DVD: 'We were only looking for 'tweaks' at that stage,' Vikki says.

Caroline Brown, a carer for both parents, attended the workshops.

'I knew something wasn’t quite right as did a number of others participating,' Caroline says. 'The original DVD just wasn’t reflecting our experience closely enough. What was really good was that people listened, and extra filming, despite the budget constraints, was undertaken again. We really felt heard.'

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Outcomes

Around 50,000 copies of the DVD have been disseminated to NHS Board resource libraries across Scotland, as well as the voluntary and statutory sectors. Individual copies can be obtained from the Alzheimer Scotland 24-hour dementia helpline on 0808 808 3000. The DVD won the Institute of Internal Communications award for best use of audio/visual communication in March 2011, with the judges stating that the DVD was 'compelling, informative and sensitively shot'.

A second DVD, 'Living well with dementia', was developed following the success of 'Coping with dementia'.

Evaluation

A formal evaluation of the effectiveness of the DVD has been undertaken, during which carers were positive about the DVD resource. Vikki says, 'One carer told me that the process of being involved in making the DVD has had a tremendous impact on her life. She said that she could now talk about dementia and articulate her feelings.

'Others have said the learning curve was the most important aspect – understanding more about dementia and Alzheimers. Another turned their experiences into a force for good, becoming a spokesperson, gaining confidence that what they know is important to share.'

Caroline says, 'I have handed the DVD out to so many people. I was on a rollercoaster with both parents having dementia, I needed something good to come of this personally. If there is one person who gets something out of this as a result of me participating then it will have been worth it 100 times over.'

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Lessons learned

Vikki says, 'The success of this project is a consequence of dedication to listening.'

What’s next for the project?

The ‘Living well with dementia’ DVD is now complete and was launched at the end of June.

The DVD will be shown at a series of local and regional events throughout the year, and copies of the DVD have been distributed to NHS Board health promotion libraries. Individual copies can also be obtained from the Alzheimer Scotland helpline. Further targeted dissemination to other organisations and individuals will be completed later in 2011.

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Related documents and links

The DVDs complement NHS Health Scotland’s suite of dementia resources targeted at people with dementia, their families and carers and health and social care staff involved in caring for someone with dementia:

Contact

Fiona Borrowman
NHS Health Scotland
Thistle House
2nd Floor, 91 Haymarket Terrace
Edinburgh EH12 5HE

Telephone: 0131 313 7531
Email: fiona.borrowman@nhs.net

 

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