Short Break Stories

Short Breaks for people with Dementia and Their Carers

A story by Alzheimer Scotland - Action on Dementia

We provided grants directly to carers who are caring for person(s) living with dementia living in Scotland.

Being a national organisation we offer the same opportunity all applicants no matter their geographical location, giving them a break from their caring role.

What Short Breaks for people with Dementia and Their Carers did

We have continued to keep the application process simple, as both carers and referrers have found the simplicity of the form encourages people to apply. People complete a two page form, which only asks the information we need to assess why, what and how much would help them create a personalised break that will reduce their stress, increase their wellbeing and sustain them in their caring role. We acknowledge all applications, gathering further information if required. We find it is important to give ideas of timescales and how they will be informed of result of their application.

Regular panels are held, with dates publicised at the beginning of the funding period, that mostly meet at four to five week intervals. The panel is made up of a person living with dementia, a carer and a member of staff (all volunteers). The Creative Breaks Co-ordinator facilitates the panel. Applications are decided on the day, but may be carried over if further information is required. All applicants/referrers are contacted within a week of the panel date. Offers of funding are now confirmed by letter, after an initial telephone conversation.

The funding is advertised through a network of previous referrers, key contacts and national websites. We also use social media to promote the funding opportunity. One of our strongest routes is word of mouth, as people spread the word about how much this meant to them. Details of the opportunity are now being shared by dementia cafes, carers support groups and other types of groups, as people meet together and discuss what makes a difference to them. We also helped people share their stories through the press and other media outlets, as hearing about the real changes this type of funding makes is more relevant than anything else.

This word of mouth has attracted organisations to contact us to see how they can be part of helping to be part of the difference that Time to Live can make to carers. This has again led to new opportunities, as Cottages & Castles came back to us for a second year with further donated properties from their owners, allowing us to reach over 20 more carers, some who would never have applied to our funding.

One couple really needed a break away from the normal routine, but this would not have been possible without family support as they wished to go away together. The family wished to go abroad for a week's break and funding was granted to allow the couple to join their family. The feedback was amazing. This break had allowed the person living with dementia to become himself again, helping the family reconnect with a well loved member and creating such special memories.

The carer managed to be able to relax in the company of loved ones and this helped her to enjoy the break to it's fullest. It also highlighted to the family that the couple both required more support and this will be looked at. "Due to travelling with family and meeting new people, having dementia has no limits when you are enjoying yourself.

Happy experiences and feeling good within yourself lifts spirits with all concerned and promotes general wellbeing. " Carer

One carer was at the point where he felt that his mind was racing all the time and that he was frankly exhausted. He thought that music lessons would help him and we agreed to purchase a musical instrument and group lessons so that he could get some time to enjoy being himself.

He got so much from the company that one of his highlights was the time they got together and chatted over coffee during every lesson. The carer felt that it was so good for him and he has signed up for a further beginners class.

Even now just strumming the instrument makes him feel more relaxed and he is so looking forward to continuing his new hobby.
Our Dementia Advisor was working with a lady who lives in a very remote area. The lady was finding it very difficult to stay connected to the world and was at great risk from isolation. The Dementia Advisor came to the project and asked if we would consider funding a tablet to allow the lady to use Skype and other applications to keep both herself and her husband connected to their family, friends and the wider community.

Thanks to being able to share the creativity of the breaks previously taken the message was getting through that traditional breaks don't suit everyone and that sometimes it takes a different approach to create the right situation.
One application had the aim of allowing a carer to take the person he cared for back to the places where she grew up. When the illness caused the lady to deteriorate very quickly the decision to make the move to long stay care was made. This had been very hard on the carer and he was struggling with the situation, but wanted to return the funding. He didn't want to take a break on his own and we suggested he go away and think about what would help sustain him in his caring role.

After discussions with his carer resource worker he came back and asked if he could use some of the funding to purchase DVDs that he and his Mum loved so that they could relax together and return the rest. This would make visiting Mum in the care home much easier and it has given them both some really amazing time together. He also felt good knowing that the funding he returned went to help someone as much as it had helped him.

What Alzheimer Scotland - Action on Dementia has learned

We thought that we were giving all the options that people needed by our varied ways of funding breaks, but as we have moved through the year it has been about giving people more support throughout the process and identifying the people who so need a break but without a little extra help could not make it a reality. It is so vital to offer that brokerage option for people. Even if you are not the broker. Knowing what help is out there and signposting people to it has meant that even when we are not able to fund a break people know that there are options.

Working with other funding streams, funders and providers to help people create their own breaks has been something we have worked on this year. We have let people know about local sources of funding that might meet their needs better. Suggesting ways that support can be accessed in another local authority area, or even abroad, had been a vital part for people wanting to go away together.

Increased use of social media and national press has helped us reach families and carers that are not known to any of the services and has increased the number of carers applying directly. Through good examples of breaks being shared we have encouraged people to think about their own situations and come to us with suggestions that are more creative and personalised than ever before.
Top tips Alzheimer Scotland - Action on Dementia's top tips for an organisation that wants to run a similar project
Tip 1:
Keep reviewing - don't take it for granted that what worked in the past will work in the future.

Sometimes small changes can make big differences. Things like supplying a freepost envelope to return feedback has increased the amount of feedback we have received over the years.

We always agreed a time that we would send out information to gather receipts and feedback, but confirming all grants by letter at the start has encouraged people get in touch if the break has happened earlier or if the break is becoming difficult to take.
Tip 2:
Take time to ask those referring to your service about why they use your service.

We carried this our this year and it has been very interesting to hear why we were picked. We wanted to know if there was still a place for our fund, with our funding finishing this year, and referrers have confirmed that there is still a need and this has encouraged us to look at how we take this forward.

It is always worthwhile to see if you are still relevant, needed and you may be the only service meeting a specific need. You may have a unique selling point that no other service or project has. Find it, explore it and work out how you market it.
Tip 3:
Don't judge - have those good conversations.

Many of the breaks we have funded have not been through financial hardship, but through carer stress. Many of the applicants could not see how a break would make a difference or how they could arrange a break. They couldn't see past the traditional system for respite and didn't want a break without the most important person in their life.

Having those good conversations can allow a carer to explore their situation and come up with something that would make a great difference to them.