Short Break Stories

Short Break Funding for People with Dementia and Their Carers

A story by Alzheimer Scotland

We provided grants directly to carers who live in Scotland and are caring for someone with a diagnosis of dementia.

What Short Break Funding for People with Dementia and Their Carers did

We successfully provided direct funding for 83 breaks for people with dementia and their carers in 24 local authority areas. The fund was available to all carers living in Scotland, who cared for a person(s) with a diagnosis of dementia, with the aim of giving them time for a break.

All carers who met the criteria were asked to fill in a two page application form telling us about why they needed the break and what they intended to do with any funding received. We created clear guidance in plain English for both the referrer and applicant to help create good applications and we did not means test the applicants. We did ask for a referrer to confirm the carer status, as many carers have now started to apply directly to the fund and are not users of or known to local services. Application forms were acknowledged and heard at regular panels held throughout the funding period. Any incomplete applications were contacted prior to the panel to make sure we had all the information we needed.

The panel met every 4-6 weeks and was made up of people who represented a staff member, a carer and a person with dementia. These panels considered all applications made from in that period. Most funding was given in full, with a minority of breaks being adjusted to allow for true cost of the break applied for. Funding was paid mostly directly to carers to arrange their own breaks.

The funding was advertised on our website and other relevant websites. We also produced a flyer which gave information about the funding. Key to promotion was talking to local carer centre's and groups, to allow us to reach carers not using local services. Identifying key people to promote this funding in areas which we found hard to reach was vital. We gathered together information that would be helpful to people to arrange their breaks and gave people time to discuss how they would use the funding. For the next funding period this has become a 'What is a Short Break' guide, giving people ideas to be creative.

One carer required a longer break than normal to allow time in their own home to relax and regain their own wellbeing. A family member was willing to offer support to allow the carer to have a month to themselves, but required local services to help them support the person cared for. Funding was applied for to allow the person cared for to attend a local daycare (which worked very well) giving the at home carer time to be themselves again and the family member quality time with the person cared for.

One funding grant went to a family who hired a remote cottage to spend some time in. This allowed the person cared for to be able to relax with loved ones and the family saw a side of the person they had not seen for years. Before the person had developed dementia they had been a lovely kind person with not a bad or cross word to say to anyone. The stresses at home and the illness had created frustration and anger that was difficult for the family to deal with, with left them grieving for the person lost. On this break the person cared for was so relaxed that the family saw them back again, spending quality and fun time with even the newest arrival to the family - only one year old. They felt they had been given the person back, to the point of offering advice about the baby!
One family wanted to take a break abroad (three generations). They could not see this happening, due to the amount of assistance that the cared for person would require. Airport assistance was suggested (not known about) and a mobility scooter was hired at the resort. This all allowed the break to happen and the cared for person to spend time with their grandchild, something that rarely happens at home.
One carer felt that the break meant that she no longer felt like reaching for the wine bottle at teatime after having had her break away from her husband.

What Alzheimer Scotland has learned

It was anticipated that most of the breaks would be the carer going away on their own, when in fact the main aim of the break was to get away together for most applicants. This figure has risen to nearly two thirds of the breaks we funded in the last funding year and we expect this to be similar in any future years we get funding.

People found it hard to visualize what a short break meant and this has led us to write a separate (one page in clear language) guidance to clarify what a short break is and we have used this as an opportunity to introduce the concept of Self-directed Support, as many people were asking about this after their breaks.

We had to totally re-write our Referrer Guidance, as so many of the referrers are no longer staff working for our organisation, due to promotion with relevant others working with carers in local communities. Also we had to create a straight forward Applicant guidance sheet (one page) as so many carers had heard about the fund from 'word of mouth' or did not want to go through a statutory agency, preferring to come to us directly.

We have found that the way we have attracted most hard to reach carers has been through getting local key people informed about the funding and they talk to people they meet. Flyers did not meet the needs of people who needed to know how important this funding could be to them. Being able to access the depth and breadth of the various breaks already taken and sharing these stories has inspired both individual carers and those working with carers in their local communities to create breaks.
Top tips Alzheimer Scotland's top tips for an organisation that wants to run a similar project
Tip 1:
Keep your all of your paperwork as clear and concise as possible. This will allow the funding to be accessible to more people, as excessive or complicated forms put people off applying.
Tip 2:
Be clear about the evaluation information you need to record. Take advantage of the training and help offered by Shared Care Scotland, as this was invaluable to us.
Tip 3:
Be prepared to learn and constantly evaluate the way your fund is running. Put learning into action to improve the experience of those using the funding.