Short Break Stories

Dementia Adventure Moray

A story by Quarriers

We provided short breaks for Carers and people with Dementia living in Moray, re-engaging people with their environment. There were a mix of day and residential breaks delivered in partnership with Dementia Adventure and Newbold House Trust in Forres, involving different local providers.

What Dementia Adventure Moray did

We offered 2 residential short breaks and 1 taster day, all based at Newbold House in Forres. Sessions were promoted to a total of 119 families, via local press, Social Work Teams, Carer Management, medical professionals, Alzheimer Scotland, other local agencies and our own Support Workers.

9 families took part in our breaks, supported by 8 volunteers trained to enable participation in the breaks, and to allow carers the opportunity for some time away from their caring role, if required. Volunteers completed core volunteer skills training, and specialist Dementia Adventure training, aimed at increasing their awareness and understanding of dementia and fostering the culture of positive risk-taking promoted within the breaks.

Residential breaks were led by a trained Dementia Adventure Leaders, shadowed in the second break by a member of Quarriers staff training to lead such breaks. Breaks were based at Newbold House in Forres, offering on-site accommodation and a central location to access a range of local activities, which included farm walks, dolphin & seal-watching boat trips on the Moray Firth, pottery making, bird watching, cookery/baking, yoga, star-gazing, herbal and sensory walks and relaxation sessions. Other activities offered, but not taken up, included quad biking, country crafts and cider making.

The programme for each residential break allowed quiet times throughout the day for people to recharge their batteries and just enjoy their surroundings. All costs for the breaks were covered, with refreshments during trips and entrance fees for activities all included. In the evenings, DVDs and musical activities were provided on-site, offering people time to socialise and relax, with an impromptu Ceilidh during the second break proving very popular!

David is in his 80's and was diagnosed with Dementia more than 2 years ago. Peter a younger friend is his full-time carer, cooking cleaning and providing personal care. They have never taken a break together, and Peter lacked confidence to consider arranging one.

David occasionally uses a wheelchair, and reminisces about the long ago past, rather than recent memories, with repetitive conversation about his younger days. Over the course of the residential break, David and Peter engaged with other families, took part in all the activities on offer, and enjoyed every aspect of the break.

On the last day, Peter commented ‘he’s talked more in the last 3 days than in the last 3 years’, and observed that David hadn’t repeated long ago memories but was commenting on things happening during the break itself. At the catch-up event a few weeks later, David joined the group and took part in the conversation about the pottery painting they’d done during the break, instead of retreating into his ‘safe’ memories as he would have done before the break. Peter feels the break has been a major achievement, with lasting benefits for both of them.

Lasting benefits for Peter and David include, Increased meaningful interaction between them, discussing the break and what they did, rather than David talking ‘back in time’ when Peter didn’t know him and can’t contribute, increased confidence to look for other activities they might join.

All families reported feeling more confident about taking short breaks in future, and in doing more together generally. In 2 cases families felt before the break that they would never have the confidence to do so. One couple contacted Dementia Adventure to request details of holidays with the Company, and were disappointed that there were no dates compatible with their availability, they are looking forward to receiving updated information when it becomes available, and are determined to book something as soon as they can.

Feedback from potential participants highlighted that lack of en-suite facilities at Newbold House was a deterrent, particularly for families where the person with Dementia is up frequently at night, or is perhaps incontinent. As a result, Newbold House have reviewed their breaks provision, and will be focusing on day activities rather than overnight accommodation, working with local providers to offer a range of experiences.

Quarrier's gathered a significant amount of feedback from families taking part and from those unable to take part for whatever reason, with the resulting information offering excellent learning to inform future breaks. In particular, working with carers to identify the barriers to them feeling able to participate, including fears of the Cared-For person displaying challenging behaviour, being unwilling to leave home and stay somewhere else and the potential disturbance for others if the Cared-For person wanders at night. This valuable information will contribute to the development of breaks in future, and of appropriate support for families to enable participation.
Carers highlighted the benefits of being able to relax with people who understood and accommodated the requirements of the person they cared for. Two reported an increase in their ability to relax with other people, and five reported an increase in their perceptions of other people being able to understand their situation.

Two of the Carers who met during a break have kept in touch and continue to meet, which has proved invaluable as the family circumstances for one become increasingly challenging. All participating families have been supported to meet together at an informal gathering to celebrate the experience, share photographs and memories and offer feedback on the process and programme, with conversation flowing easily between people and the potential for peer support further encouraged.

One Carer commented, ‘I’ve made new friends and will keep in touch’.
Liz cares for her partner, Harry who was diagnosed with Dementia just 2 years ago. Harry has experienced increasing difficulties eating, and Liz and Harry were both concerned that mealtimes on the break could be challenging and embarrassing. Newbold House confirmed that meals in their room would be possible if necessary, and offered to make specific dishes that Harry would be more able to eat. Liz and Harry used to enjoy a lot of outdoor activities, but this has become more difficult lately.

Since taking part in the break, Liz said that ‘Quarrier's saved my life’. She feels Harry relaxed quickly on the break, and since then has been much more confident around other people.

The breaks showed them they can still enjoy activities together, and they are keen now to do as much as they can.

What Quarriers has learned

Preparation, for many families the diagnosis of Dementia has been traumatic and impacted on their view of how to behave as a family. Merely offering the opportunity for short breaks isn’t sufficient incentive for them to take the risk of getting involved, when their perception is that this will be difficult or upsetting in some way for the person with Dementia. Our staff spent a long time talking 1:1 with individual Carers and the person they Care For, helping them talk through their reservations and looking at solutions or ‘worst case scenarios’ to help them prepare. For many, though, this still wasn’t enough.

In future, we would preface the short breaks opportunity with a Lifelinks Programme for families of someone with Dementia, helping them identify connections within their communities and increasing confidence in their ability to maintain them. Which would lead naturally to participation in short break activities, whether stand-alone or residential.

Confident leadership, the benefit to the programme of experienced and confident leadership from the Dementia Adventure Leader on each break was immense. Growing that leadership within our own team will take time, and although we have started the process, the funded breaks would have been less successful without his input, which in turn has increased our understanding and ability in relation to running more breaks in future.

Challenges, we developed this programme in partnership with Dementia Adventure and Newbold House Trust. Communication with Newbold House was a vital element of ensuring progress, however their reliance on a team of volunteers within the different roles required to run the House impacted on smooth communications, with a range of different people picking up/responding to emails at different times and consequently the train of information often being broken or lost.

Similarly for the break Leader and volunteers, knowing who in the House to speak to on a day-to-day basis was difficult, and attempts to identify a single point of contact didn’t work with the House’s structure. Finding a way to maintain effective communication, without compromising the fluidity of the House’s operations was challenging, but the overall outcome reflected the shared desire to offer a positive and productive experience for participants.
Top tips Quarriers's top tips for an organisation that wants to run a similar project
Tip 1:
You don’t need to aim high, but aim for what will work.

People with Dementia and their Carers aren’t looking for expensive, complicated or grand activities, only for experiences they can enjoy together. Our participants got as much enjoyment out of sitting in the evening reviewing the day’s activities as they did from taking part in the activity itself, and the opportunity to reflect on it later perhaps helped with recollection, so don’t fill every moment so full that there isn’t time for that.
Tip 2:
Allow sufficient time to develop strong links with families who might benefit from the break understanding their concerns and fears, supporting them to reach a point where they feel able to consider the break.

We would preface future break opportunities with some targeted work with these families, supporting them to review the activities and community engagement they once enjoyed or feel at risk of losing, and helping them identify what they need to sustain these now and in the future, within which the breaks can feature.

This offers a stepping stone for those families who might otherwise view the break as too big a change from their routine, or presenting more challenges than benefits.
Tip 3:
Take lots of photographs. We collated all the photographs taken by everyone during the break and put them together on a CD for participants to have as a memento.

We also selected one photograph from each break and produced a small gift for participating families (a framed photo from the first break and a photo key ring from the second). This gave us a reason to bring them back together again, to view the photos and rekindle friendships.