Town Break is a local charity set up in 1992. It operates out of Stirling, serving people across the council area, and it has also recently expanded into Falkirk. It provides support services to those diagnosed with mild to moderate dementia and their carers. Davina and Dawn, both Dementia Services Co-ordinators with the charity, kindly met digitally with OCN volunteer Janet Wood to explain the many ways in which the current pandemic has impacted on Town Break’s work.
Before COVID-19
Prior to the pandemic Town Break offered a befriending service; programmes of Cognitive Stimulation Therapy (CST); Self-Management groups; three Day Clubs a week; Coffee and Gardening get-togethers and two Friendship Groups. Their key clients were the people with a dementia diagnosis who were brought face to face with each other, staff and a host of volunteers to engage in activities which provided a strong sense of fun and ‘family’. Carers benefitted chiefly from the respite offered although they too could enjoy social time at the Friendship Group sessions and events such as the Christmas Dinner. A fairly new development had been the setting up of parallel coffee groups in which Town Break hosted clients with a diagnosis whilst Alzheimer’s Scotland facilitated a gathering where carers could come together for advice and peer support. In March every one of these services stopped abruptly, and they have all remained unavailable because of the client group’s high level of vulnerability. Sadly, the expansion into Falkirk halted almost as soon as it began.
The Early Days of Lockdown
As news of Covid 19 began to dominate the headlines Town Break took great care to keep up to date with medical advice and as soon as the first two cases of the virus were reported in Forth Valley they closed their services – pre-empting lockdown by a week. Staff are glad that they acted so promptly, but the speed with which things changed came as a shock. They had to think quickly of a way to keep offering support and soon came up with a plan to maintain contact through telephone calls. Befrienders were charged with phoning the individuals they currently worked with, whilst Dawn and Davina took responsibility for calling the 32 clients who were using the Day Clubs when lockdown hit. Weekly contact was made at a time when the individual would normally have been at a Town Break session.
At first staff expectations were that they would be speaking mainly to the person with a dementia diagnosis, but it rapidly became clear that this was not always going to be the case. Some clients had difficulty even getting to the phone because of mobility issues, and callers had to learn to give them plenty of time so that they didn’t rush and fall. Sometimes calls went completely unanswered and it was decided that after three unsuccessful attempts to connect a carer would be phoned where practicable. Even when they did reach the phone clients with dementia often struggled to maintain any length of conversation because they lacked the usual facial and physical cues of talking face to face. One exception was a client with early stage dementia who remained outgoing and greatly missed his independence. He began phoning Town Break up to eighteen times a day because he felt alone. For him, they were a lifeline. Based on his experience, other lonely or particularly vulnerable clients were identified and arrangements were made for them to receive additional phone calls which were usually undertaken by a volunteer.
Staff soon found themselves talking more and more to carers marking a subtle shift in the support they were providing. In the earliest days, when headlines were dramatic and there was a general fear of the unknown, the main requirement was for Davina and Dawn to offer reassurance and a listening ear. Being aware that they needed to avoid duplicating services, they also did a lot of signposting to other providers, becoming adept at checking details and finding contact information online whilst still talking, so that clients had what they needed before a phone call ended.
One practical concern which was frequently raised in the early days was that households would run out of essentials such as toilet rolls, tissues and hand gel, and from this starting point a new initiative was born. Town Break decided to put together a ‘comfort bag’ for each client with dementia. As well as including the practical items required it contained some food treats and something personalised to each individual (e.g. a CD of their favourite music or art materials). The bags were extremely well received and two more have since been organised and delivered. Taking the bags round gave Dawn and Davina an opportunity to see clients again, which they enjoyed, but stood outside, at a distance and wearing PPE they were struck by just how much they missed the close contact of the past.
Another task established early on was for staff to message volunteers on a weekly basis in order to keep them informed and to check on their wellbeing. Most volunteers have sent regular feedback, and it would be interesting to hear more about how they have felt over the months since March. No doubt they have greatly missed the camaraderie and sense of fulfilment that went with their volunteering role
The Falkirk project now has a new Co-ordinator and a new Facebook page has been set up and connections made with local partners and organisations, spreading the word about what can be delivered in the Falkirk area.
As lockdown progressed
After phoning clients and carers for some weeks, Dawn and Davina realised that they were learning details about them which they might never have discovered in the course of normal Town Break sessions. Sometimes these discoveries were health related as clients told them about underlying issues that were forcing them to shield. At other times they learnt more about the client’s interests or family. For example, one lady told them how much she appreciated the female chat she got when they rang because, not only did she live with her son (which they knew) but also her wider family was all male (which they didn’t know). This getting to understand the clients more as individuals was something welcome to come out of a difficult time.
Unfortunately, with the weeks passing not everything was so positive. Town Break noticed that for many the mood, especially amongst carers, began to change from anxious but fairly upbeat to much more depressed. Calls with some carers were now lasting an hour to meet the need for them to get things off their chest. Some were struggling because their loved ones could not understand the everyday consequences of the pandemic, and others were really missing the respite that Town Break and other services had previously offered them. Sadly, in some cases, the person with dementia had to go into a home because their carer (often elderly and vulnerable themselves) could no longer cope with looking after them unaided and around the clock. In these instances, the emphasis of Davina and Dawn’s work changed considerably. Prior to lockdown they would have taken phone calls or had quiet chats and offered support to carers who had concerns only whilst their loved one remained with the service. Now they knew that they had to keep reaching out to those whose family member had gone into care, even though this technically took them outside the charity’s remit.
Some of the situations that Town Break staff have had to deal with as the weeks progressed have been very sad and this has greatly affected them. They have found it particularly challenging where they have been unable to assist as much as they wanted to, and especially where they knew that a visit, a hug and other direct comfort would have helped but couldn’t be offered. They have, however, continued to feel valued and say that it is very rare that a phone call passes without them being thanked for all they are doing. Often carers apologise for moaning at staff, but Dawn and Davina are just glad that those they call feel able to open up to them. They have also been heartened by how often clients have told them that people in their neighbourhood have stepped in with assistance. As well as neighbours and acquaintances getting shopping, collecting prescriptions and generally checking in on clients, they have heard of church initiatives (for example, at Allan Park South) and of local groups (such as The Bridge of Allan Friends) offering similar services.
As lockdown eased then wavered
When restrictions began to lift, Town Break harboured hopes of re-opening some level of face to face services, but knew this could only happen when it was really safe for their vulnerable clientele. Unfortunately, the levels of Covid rose again before that safe place could be reached. Consequently, the phone calls continue and have now passed 2,700 in number. The charity has considered using some form of video link (such as Zoom) so that those they contact can see as well as hear them, but staff have some reservations about this approach. For one thing they know that many of their clients have very little experience with technology and they do not want to put them in a stressful position trying to use a method of communication which is new and unfamiliar to them. Also they have seen that the use of a video approach can be very upsetting for some people with dementia, such as the individual for whom they arranged a Skype call with family who went on to have nightmares because they were convinced that people had now got into their house. It is therefore an avenue that Town Break is exploring with caution.
Over the months a few of those on Davina and Dawn’s contact list have sadly died and new clients are not coming to them as readily as they would have done in the past because the Community Mental Health Team, until very recently, have not been seeing new patients with dementia. The charity does still have a waiting list, but feels it is inappropriate to call those on it until they can be offered the services that used to run. The worry is that there is a cohort of people out in the community who will miss out on all that Town Break used to provide because they will have progressed into the later stages of dementia before they can be identified and welcomed in.
The future - its challenges
Fortunately, Town Break has managed to sustain funding so far thanks to donations and grant applications, but this could become a much greater worry if normal services are suspended for the long term. Davina and Dawn are convinced that the charity will continue, but know that it will look very different when it first opens its doors again.
At present they have many questions. Will clients with additional health problems be able to come back? Will some have lost the confidence to go out? Will carers need to accompany clients initially? The latter seems likely in which case it will mark a loss of independence for the person with dementia and a loss of respite for their carer.
Other big questions concern where and how the groups will meet. Before lockdown a number took place in a hub at Stirling Community Hospital, but this is no longer available as it is being used to help NHS staff to socially distance while meeting a backlog of patients. Town Break would like to spread further out into the community and reduce client travelling, but finding appropriate places is not easy. Initially (once locations are identified) much smaller, and therefore safer, groups are planned, but this will put an increased demand on staff and volunteers as will many aspects of the new ways in which they are going to have to work. As a charity Town Break does not have an official set of guidelines to follow as it contemplates returning to face to face services and Dawn and Davina think that more training might be needed to clarify how they go about things. They will certainly need advice on some practical issues such as whether they can still help clients to mobilise without breaking social distancing requirements.
The ‘look’ of groups such as the day clubs is going to have to change considerably. PPE will be mandatory but will take away the informal, friendly appearance of staff and volunteers and, crucially, will hide faces and the smiles that can mean so much. Food will no longer be served communally, but will have to be plated individually which takes more time. Visits, for instance from pet therapy or the local schools, will have to stop. Popular pastimes such as dominoes, scrabble and jigsaws will not take place as groups of people cannot be allowed to handle their pieces (all of which have had to be cleaned individually and put away). Singing, an absolute favourite amongst clients, will also have to stop, and Davina and Dawn wonder just how much of the pleasure these restrictions will strip from their gatherings. It is certainly going to be a challenge to keep spirits lifted the way they used to do. After a session, cleaning, which was always important, will have to be even deeper and more time consuming.
Hopefully Town Break will be able to rise to all these testing changes and continue to offer their wonderful, and much appreciated, support to local families living with dementia. Thank you for all you do.
Produced by OCN volunteers, partners and participants.
This is the latest in a series of blog posts reflecting on the experiences of people living with dementia, their carers and neighbourhoods during the coronavirus pandemic. The posts are a synthesis of perspectives gathered with people living with dementia in Central Scotland over the course of the Covid-19 outbreak in 2020. These have been collected by OCN volunteers and drafted collaboratively in order to build a larger picture of the impact of Covid-19 and what the changes around it have meant for people living with dementia and their carers. It is important to highlight that in most instances these are people who will have been shielding for a significant period of time. It is clear, therefore, that more must be done to improve their access to support, community and to reduce loneliness. We hope these articles will widen understanding of the issues and draw attention to what can be a hidden problem for many people.