Short Breaks for People with Dementia and Their Carers
A story by Alzheimer Scotland
We provided grants directly to carers who care for someone living with dementia. The break or activity must help to decrease carer stress, increase carer wellbeing and help them sustain their caring role.
It is aimed that this is done without adverse effect on the person that they care for and mostly an alternative to traditional respite.
What Short Breaks for People with Dementia and Their Carers did
People could either download the forms or request they were sent out. Criteria was created that gave examples of what a short break might look like for them and answering the most important questions in a plain English format. The language echoed the current Self -directed Support agenda, to help carers get used to the new terms that are being used, but avoiding jargon and making it accessible.
We asked people to fill out this simple two page form, which guided them through all the details needed, complete with prompts to help them cost their breaks. This allowed the carer to keep maximum control of their application. We asked carers to give us details of someone working with them to support their application. Forms could then be posted or emailed to a point of contact to be collated for the regular panels. All forms received are acknowledged and further information taken if needed before the next panel.
The panel is made up of a small group of people who look over the applications that are heard on an agreed date (advertised directly to referrers and information on the website). Each panel consists of a minimum of a person living with dementia, a carer and a member of staff. The forms are read on the day and the decision to grant and how much is made at the meeting. Applications may be held over if the panel feel that more information is needed and heard at a future panel. Due to good conversations before the panels this only applies to a maximum of a couple of applications per panel on average. All applicants heard at a panel will be notified within a week of the panel of the decision made.
Carers are informed about the opportunity on our website, through our services and through an extensive, and ever growing network of people working in communities, directly informing carers at groups, dementia cafes and one to one meetings. Carers who have already benefited form a break are some of our best advertisements and often carers get in touch directly because a friend has suggested they apply, as it made a big difference for them. Previously we had leafleted/postered areas, but we have found that the best way to promote this is through word of mouth.
So he applied for help with decking and suitable furniture to allow his Mum to go with him and his wife, safely. Now they all go to visit the caravan and this has allowed the stress levels of all concerned to be reduced. And now that caravan is 'dementia friendly' another family have accessed the opportunity, something that the carer is very proud of!
The unexpected outcome was that the carer not only got to mourn her sister, but other extended family got to see the reality of the situation, spent time with Mum to allow carer to grieve, and have offered to come over and spend time with 'old mammy' to help the carer continue to care for her Mum. If the carer had not been encouraged to apply this outcome would not have happened and the carer truly feels that this has helped her enormously!
What Alzheimer Scotland has learnedAs the Time to Live Funding is not a traditional part of our services it has allowed us to reach people who do not receive services from our organisation and hard to reach groups - such as the traveler population. This has encouraged them to seek support from other areas/funding and to approach us not just as an opportunity for breaks but as a source of information, advice and being seen as a trusted contact for now and the future.
Organisations are now approaching us to offer opportunities and looking for advice on short breaks. They have become aware of the creative nature of our thinking and we have had to learn to work with this, creating new beneficial relationships for those we are working with now and those we will be working with in the future.
It has allowed us to work in partnership with other individuals and organisations in many areas that we had previously not been able to reach. We have been able to learn how to sensitively encourage and support those from the BME community, through working with key members within trusted organisations, to apply successfully for funding.
We have learnt that our project is at its best when we are sharing the learning that we have gained through four years of granting breaks. This may be sharing examples with colleagues and other referrers, speaking at events or having those good conversations with those applying. We can uplift, encourage and inspire others to look for great outcomes and real benefits for those affected by dementia.
Through participation in the first Think Tank on sustainability we have not only learnt from our own experiences, but learnt from other valuable input as to what makes a project sustainable. This has allowed us not only to re-evaluate our project, but identify good examples of ways to enhance the opportunities we already offer and identify possible new avenues to meet the needs of carers all over Scotland.