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Our workshop on Dementia

As part of our #DementiaFriendly challenge the GeniUS!York team held a workshop on dementia at the Ron Cooke Hub at Heslington East University Campus. This took place last Wednesday and was facilitated by Heather Niven of SCY and Nada Savitch of Innovations in Dementia.

The aim of the workshop, which was open to anyone wishing to attend, was to open face to face discussions with people on the issues directly relating to our challenge which are:

What are the problems faced by people with dementia and their carers?

How can we help solve these problems?

The workshop started by watching a short video called 'My Life, My Dementia, My Club', which showcased a club in operation for people with dementia and how this helps them in day to day activities that they all enjoy.

We were honoured and lucky enough to have Tony & Jenny in attendance. Tony and Jenny are husband and wife, live in Huntington and have been together for over 40 years. Tony is a full time carer for Jenny who lives with dementia. Tony was kind enough to take centre stage and talk to the group around the main issues and problems faced by Jenny and himself on a daily basis. These are:

1. A general awareness of dementia. Although great strides are being made on this Tony felt that there was still a general lack of awareness surrounding dementia. This means that people are stilll unaware of the prevalence of the condition and that people, businesses and locations are not prepared for people with dementia.

2. Toilet facilities. In many locations the toilet facilities are not suitable for people with dementia and their carers. Often there is the need for enough space for both the person and their carer. Tony must accompany and aid Jenny at all times.

3. Access. This is sometimes limited for people with dementia at both shops and buildings and also on public transport.

4. The risk of seperation. Jenny's condition, as with others with dementia, incorporates a risk of seperation from the family member or carer. Not only is there a risk of this happening but increased risks should this occur.

5. Awareness of the symptoms & behaviours associated with dementia. Beyond a general awareness of dementia a better understanding of the symptoms and behaviours people undertake with dementia would help Jenny & Tony. If people understood these and how best to react this would be of great benefit to those with dementia.

In reaction to Tony's top 5 issues, the rest of the workshop was spent talking about what could potentially be done to combat these directly and the various ways this could be done. The group spoke about and proposed various possible areas for solutions including:

- The creation of, and better circulation of, blogs and experiences of those who live with dementia. The group found it both humbling and enlightening to listen to Tony and felt this was a great way of helping people understand the issues.
- Media campaigns. At a local and national level. Helping raise awareness and dealing with specific subjects such as 'how to deal with certain situations'.
- Increased and improved training for carers and those supporting people with dementia.
- Improved signposting to networks for people/carers with dementia. Could we develop networks between existing organisations in the City and beyond?
- A link person (assigned to a person of family) who could deal with all organisations and link the need to provide information to third parties and receive the information required back.
- A local helpline providing out of hours support.
- A number of possible solutions were discussed which were based around the best ways of using technology to incease the safety of people with dementia. These were centered around monitoring and tracking systems to aid the family/carer/person with dementia relationship.

Hopefully, by reporting back on the workshop discussions, this will help give everyone with an interest in our challenge some further food for though on the problems were aiming to solve and the possible solutions. The challenge runs until Friday 2nd November so there is still time to get involved.

A second workshop is being held tomorrow at the Ron Cooke Hub from 9.30am. Further information can be found here. It would be great to see you there.

Above: Our workshop facilitators Heather Niven (left) and Nada Savitch (right) with Jenny.

Above: The start of the GeniUS! Dementia Workshop.

Photos courtesy of Tony.

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