Increasing and supporting resillience in dementia carers

In May this year www.dementiacarer.net was launched with the support and collaboration of CCGs and Local Authorities in Doncaster, Barnsley, Sheffield and Nottinghamshire.

The resources on the website have been developed with carers with the aim of increasing carer resilience and ultimately to help people diagnosed with dementia to live better.

How we developed www.dementiacarer.net To develop this resource we talked to nearly 100 carers about their daily lives, the difficulties they faced and what helped them to be more resilient. More resilient carers will be less likely to be ill themselves; able to care for longer; able to care more effectively; able to delay the entry to long term care for the person they are caring for; less likely to use hospital and respite services inappropriately; more able to access and gain support from local services, and so forth. Resilience is not something that people either have or do not, resilience can be learned and as we learn we increase the range of strategies available to us when things get difficult.

What the website offers - In this resource carers can:

• find solutions from other carers to the difficulties; including frustration, changes in relationships, and issues of control

• find out about other sources of information, advice and support and activities in their local area

• share the information they find with others by print or email;

• read tips from other carers taken from the original research

• link to other sites offering support and information on subjects important to dementia carers.

How the website might be used - Christine lives in Leeds away from her mum Joan and dad Terry who live in Barnsley. Joan has just been diagnosed with dementia and Beth wants to find some information out for her dad on activities to do with her mum. On the website she finds: • Links to activities for carers and people with dementia in Barnsley where her dad can take her mum; • Videos of carers in a similar situation to her dad that give solutions to problems; • Written tips from carers that she can print off or email to her dad • Links to other sites with activities for carers and their loved ones to do together

Christine shares the site with her dad who now uses it whenever he needs more information or as he comes across a problem he hasn’t encountered before. As Joan’s dementia progresses he has found out tips on: • Practical problems in the home like washing and dressing; • Practical problems out and about like using public toilets; • How to talk to his wife and find out her needs; • How to talk to other people about his wife’s needs; • How to help his wife live well, keep active and not get down; • How to stay positive, active and well himself. He knows that there also sections on getting respite or daycare that might help him in the future.

Christine and her dad have now become such experienced carers that they want to share their tips with others through the site.
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