Getting things started

What are you going to need to make it work?
Where might your cafe fit in the local ‘dementia landscape’?
What about areas such as planning, funding, finding a venue and getting volunteers?
How do you go about ensuring your members have a voice and setting up a committee?

Introduction

In this section, we lay out what you’ll need to do to get things started.

We present this in a loose chronological order. Life is messy, though, and it’s likely that in the real world, things will be not quite as neat.

  • Getting people to help. You can’t do it on your own
  • Developing a plan
  • Deciding on a structure
  • Getting the funding to make it happen
  • Finding a venue
  • Recruiting volunteers
  • Publicising your cafe
  • Making sure members have a voice

Working out what is needed

Do you need to set up a memory cafe? If you are reading this, then there is a good chance that you have decided that the answer to that question is ‘yes’. But how did you arrive at that conclusion, and what is it that you think the cafe should be providing?

You might of course have your own experience, or that of people you know, to guide you. Even so, it’s always a good idea to hear a range of opinions and experiences to find out what people want and need.

Honiton Memory Cafe have been going for more than a decade. Listen to how they ensured that they were in step with the community when they first set up and as they expanded to provide other dementia services in the town.

There are lots of other ways of canvassing opinion. You could try:

  • Asking people on social media
  • Organising a meeting of people living with dementia
  • Talking to people you know in your area that are affected
  • Putting up a survey like the one in the film clip (Survey Monkey is easy and free to use)

See the section ‘Making Sure Members Have a Voice’ for more information on getting people’s views.

Working out where your cafe might fit in the local ‘dementia landscape’

When you are working out what is needed, it will be important to consider what else is available in your area. Things to think about will be:

  • What are the statutory services provided by health and social care?

  • What voluntary sector services are there?

  • What are the gaps in terms of what is on offer, when, for whom, and at what cost?

There may well be a Dementia Action Alliance (DAA) in your area that brings together providers of dementia services and mainstream services like transport and leisure as well.

In the next clip, you can hear how one memory cafe works with their local DAA.

In many towns, the memory cafe and Dementia Action Alliance work very closely together, as their activities should complement each other…

You can also use this stage to gather support for the recruitment of volunteers and others you might need to support the running of your cafe. We’ll look at this in more detail in the next section.

You can’t do it on your own – getting people to help

You can’t do it alone. You’ll need help.

Most successful community groups start with a ‘coalition of the willing’.

Once you have decided to go ahead, you’ll need to decide what kind of structure you want to have, and then you may need people in specific roles. But, to start things off, cast around for anyone willing to help you get going.

Listen to how some of the memory cafes in Devon got started…

You may already have good local contacts that can help you to get things going. If not, then you’ll have to reach out. If this is the case then you might organise a meeting to explain your thinking and see who might be interested.

You should be armed with the information you have gathered on what is needed by people in the area, and what the gaps are. People will want to know what a memory cafe is, what you have discovered, and just what might be involved in terms of commitment.

If you don’t feel confident in speaking, perhaps ask the Devon Memory Cafe Consortium if they can recommend anyone to come and speak at your meeting.

Who to invite?

Experience shows that much rests on who gets involved at the early stages. The wider you cast your net, the more likely you are going to be to build a solid and diverse range of supporters, and the better integrated into your local community and ‘dementia landscape’ your cafe will be.

This is not an exhaustive list but might serve as food for thought to apply to your local circumstances:

Statutory health and social care providers

                  GP surgeries, local health centres, community mental health teams, memory clinics and adult social care teams.

                  These will be able to tell you more about the needs of people with dementia and carers, as well as being an important potential source of referrals once things are up and running.

                  Devon Voluntary Action has a search function for statutory services in your area: http://www.devonva.org/sector_services2 

                          Local organisations and services for older people, people with dementia and carers

                                          Alzheimer’s Society (https://www.alzheimers.org.uk/), Age UK (https://www.ageuk.org.uk/services/), carers’ forums, DEEP groups (https://www.dementiavoices.org.uk/deep-groups/search-groups-by-postcode/).

                                          As with statutory health and social care providers, these groups will be a valuable source of referrals as well as local knowledge. If you follow the link to the Alzheimer’s Society website, there’s a ‘find local services near you’ search box.

                                                  Local voluntary mutual support organisations

                                                                  Local older people’s groups, Rotary Clubs, Freemasons, Inner Wheel Clubs, Lions Clubs, Women’s Institute groups, u3a groups.

                                                                  Many of these groups will be a source of potential volunteers, and many are already supporting their local dementia cafes with venues, fundraising and catering.

                                                                          Local churches and other religious centres

                                                                                          A potential source of volunteers and referrals, as well as local knowledge.

                                                                                                  Local politicians

                                                                                                                  Many are keen to support new developments in their constituencies and will also often help with access to public premises as well as sometimes, funding.

                                                                                                                          The main thing you should be looking for from this meeting is to set up a steering committee to help you take things from here. Some of those at the meeting will be willing to help.

                                                                                                                          Some may remain involved as you take things forward, volunteering perhaps as committee members or some other role in the cafe. Others may just be able to help you in these early stages. Everyone is different and has different things to offer. All have value. Either way, this is where you are beginning to build the bedrock of support, commitment and enthusiasm that will sustain your cafe in the years to come.

                                                                                                                          Developing a plan

                                                                                                                          You should now have an idea of what is needed, and where your cafe might fit in terms of other organisations and services. You will also have a clear idea of who can help you and have set up a steering group to help you take things forward. Now it’s time to make a plan for what you are going to do.

                                                                                                                          You should begin by agreeing what you want to do, then deciding how to go about doing it. You could start by writing down your aims. Without aims, you risk being, quite literally, aimless. Neither will you be able to communicate a consistent message to volunteers, potential members and funders.

                                                                                                                          Your aims should include information about the area you are working in, with whom, and how they will benefit. It doesn’t need to be grand, and in fact it’s best if it avoids management-speak altogether.

                                                                                                                          Once you have decided what it is that you want to do, it’s time to work out the best way to make it happen. You need a plan. Again, it doesn’t need to be grand, but it does need to be clear.

                                                                                                                          Devon Voluntary Action have some great information about writing plans here: http://www.devonva.org/UserFiles/File/We_Want_Help/Info_and_Guidance/Developing_a_Plan_Full_Guide.pdf 

                                                                                                                          Listen to the pros and cons of being independent vs belonging to a larger organisation…

                                                                                                                          Now that you have a plan, you’ll be better able to decide on choosing a legal structure that best suits what you want to do.

                                                                                                                          Devon Voluntary Action have excellent guides to choosing a legal structure.
                                                                                                                          Here’s the short version: http://www.devonva.org/UserFiles/File/We_Want_Help/Info_and_Guidance/Get_Legal_Quick_Guide.pdf
                                                                                                                          Here’s the longer version: http://www.devonva.org/UserFiles/File/We_Want_Help/Info_and_Guidance/Get_Legal_Full_Guide.pdf

                                                                                                                          Most memory cafes try to ensure that they are not dependent on only the enthusiasm of one or two people, so that they can survive in the long term. A good question to ask is what would happen if you were no longer involved…

                                                                                                                          Getting the funding to make it happen

                                                                                                                          You won’t get anywhere without funding.

                                                                                                                          You should have plans for fundraising as part of your plan. See our dedicated page on Fundraising to find out how to do this.

                                                                                                                          Finding a venue

                                                                                                                          As you’ll know from the dementia awareness training, the venue makes a huge difference.

                                                                                                                          A few things to consider:

                                                                                                                          Location

                                                                                                                          • Is it easy to find?
                                                                                                                          • Do local people know where it is?
                                                                                                                          • Can it be reached by public transport?
                                                                                                                          • Does it have parking, or is there parking nearby?

                                                                                                                          Terms of use

                                                                                                                          The ‘feel’ of the place

                                                                                                                          • What is the lighting like? A dark and gloomy venue is not only depressing but can make it very difficult for people to orientate themselves and see what is going on.

                                                                                                                          • Similarly, lighting which is too bright, especially if it is strip lighting, can make a place feel clinical, and about as far away from a ‘cafe’ as it’s possible to get.

                                                                                                                          • What about the temperature? It should be neither too warm nor too chilly.

                                                                                                                          • What are the acoustics like? A place which is either full of echoes or in which sound and chatter accumulate can be terrible for everyone, but especially people with dementia or hearing impairment. Soft furnishings and wall coverings can make a lot of difference in the absence of dedicated acoustic treatment.

                                                                                                                          • Does it ‘feel’ welcoming and friendly? This can be highly subjective, so it’s worth getting a range of opinions.

                                                                                                                          Facilities

                                                                                                                          • Is it big enough? Don’t forget you might outgrow it if your cafe becomes really popular.

                                                                                                                          • Are there enough toilets, and are they accessible?

                                                                                                                          • Is it clear where they are?

                                                                                                                          • Can you store things there – the stuff you might need to run the cafe? (See the section ‘What happens at a memory café’ for more about ‘stuff’.)

                                                                                                                          • Is there Wi-Fi?

                                                                                                                          • Are entrances and exits easy to see? Some people with dementia like to be able to see the exits, and it also helpful for staff and volunteers to be able to see who is coming and going.

                                                                                                                          • Are there extra chairs in case you need them? Chairs with arms are best for people with mobility problems.

                                                                                                                          • Are there tables and tablecloths for setting out refreshments?

                                                                                                                          Accessibility

                                                                                                                          You’ll need to make sure that the building is accessible to people with disabilities. As part of this you should obviously think about people with dementia.

                                                                                                                          As you will have seen in the dementia awareness training, the physical environment has an enormous impact upon us all, and can make all the difference for someone with dementia.

                                                                                                                          You will find a free audit tool for checking accessibility for people with dementia at the Innovations in Dementia website here: http://www.innovationsindementia.org.uk/what-we-do/accessibility/ 

                                                                                                                          The kitchen

                                                                                                                          • How well equipped is the kitchen? This will cut down on the amount of stuff you have to bring along (think teaspoons, milk jugs,
                                                                                                                            tea towels, cups, saucers, glasses).

                                                                                                                          • Is there a fridge you can use?

                                                                                                                          • How about a dishwashing machine? It can save lots of time.

                                                                                                                          • Is there a hot water urn or hot water boiler?

                                                                                                                          • Is it clean?

                                                                                                                          Recruiting volunteers

                                                                                                                          Without volunteers, which very possibly includes YOU, you won’t have a memory cafe.

                                                                                                                          That’s why you’ll find a whole section devoted to recruiting and supporting volunteers here.

                                                                                                                          Publicising your cafe

                                                                                                                          The best planned, most well-equipped and staffed cafe will fall a bit flat if no-one comes.

                                                                                                                          It’s crucially important to make sure that you publicise your cafe, not just to potential members, but to partner organisations, potential funders, and to the general public as well.

                                                                                                                          You’ll find a whole section dedicated to this here.

                                                                                                                          Making sure members have a voice

                                                                                                                          In the section ‘Working out what is needed’, we looked at the importance of consulting people affected by dementia.

                                                                                                                          If you have done this, then you have a good chance of running your cafe in a way which meets people’s needs and expectations.

                                                                                                                          But then what?

                                                                                                                          In the past, some cafes have complained that things seem to become a little stale, or that they have problems attracting new members. One reason for this might be that the cafe has become ‘stuck’ around an original vision, or group of people.

                                                                                                                          This can mean that while the cafe is meeting the needs of a small, and perhaps dwindling group, it can seem cliquey and unappealing to potential new members.

                                                                                                                          It might also be the case that over time, what people want from a cafe changes. In the early days, for example, a heavy focus on activities might be useful in terms of encouraging communication and building relationships. However, as time goes by, and stronger relationships are established, some might prefer simply to chat and enjoy the company of others, rather than engage in activities.

                                                                                                                          This is why it is really important to make sure that members, as well as volunteers have a say in the direction and running of your cafe. This should not be a one-off event – it should be an ongoing process to make sure that your memory cafe is delivering what people want. There are all sorts of ways of doing this, and the methods you choose will vary from cafe to cafe.

                                                                                                                          Formal representation at your committee

                                                                                                                          Larger cafes that have chosen a structure which involves a management or steering committee, or advisory group, should make sure that it has representation from members. This should include a carer AND a person with dementia.

                                                                                                                          The DEEP network, which is run by Innovations in Dementia, has produced guidance on involving people with dementia in these kinds of groups. You’ll find it here: https://www.dementiavoices.org.uk/wp-content/uploads/2016/03/DEEPGuidance_involvingpeoplewithdementiainadvisorygroups.pdf 

                                                                                                                          Remember though, that while this does put the voice of members at the heart of your decision-making process, it is still only one or two voices. People with dementia and carers can’t be expected to represent the views of all others.

                                                                                                                          For this reason, it’s good to have more than one way of getting voices heard…

                                                                                                                          Meetings with members

                                                                                                                          You might consider holding ‘How are we doing?’ meetings.

                                                                                                                          You could either convene separate meetings to which members are invited to share their views, or make it a regular feedback sessions process as part of the existing cafe meet-up.

                                                                                                                          In this DEEP guidance, you find some good advice on running a discussion with people with dementia: https://www.dementiavoices.org.uk/wp-content/uploads/2013/11/DEEP-Guide-Collecting-views.pdf 

                                                                                                                          If you decide to run a separate event, you might want to consider speaking to people with dementia and carers separately for some of the time. It’s not uncommon for carers to feel inhibited about speaking their minds in the company of the person they are caring for. Similarly, people with dementia can often be much more forthcoming when their carer is out of earshot.

                                                                                                                          Questionnaires

                                                                                                                          A paper or online questionnaire can be a great way of eliciting views. Sometimes the anonymity afforded by questionnaires can result in some feedback and ideas that might not have been forthcoming face-to-face.

                                                                                                                          Paper questionnaires can be handed out to members, and they could return them by hand or by post. If returning by hand, it’s good practice to have somewhere they can be returned in privacy. Something like a…

                                                                                                                          Suggestions box

                                                                                                                          The good old-fashioned suggestions box is a great way of getting not just anonymous feedback and suggestions, but also ones which might fall outside of the ‘box’ afforded by questionnaires.

                                                                                                                          Just chatting to people one-to-one or in small groups at the cafe

                                                                                                                          This is often the most effective way of gathering views.

                                                                                                                          You can make a point of asking people how it’s going for them, especially if they begin to miss sessions, or seem to be enjoying it less …or indeed if they seem to be enjoying it more!

                                                                                                                          Sometimes, people will just tell you what they think without prompting. This is especially the case if you have fostered a listening culture, where people feel both able to speak their minds, but also that their ideas will be heard and taken seriously. When this happens, the volunteer should always ask if they can pass on what they have been told, anonymously or not.

                                                                                                                          What kind of things should we be asking?

                                                                                                                          Whether you use group meetings, questionnaires, or simply talk to people, there will be some key things you need to know:

                                                                                                                          • How long people have been coming.

                                                                                                                          • How often they come.

                                                                                                                          • What they like about the cafe.

                                                                                                                          • Are there things they don’t like?

                                                                                                                          • What do they think could improve the cafe?

                                                                                                                          • Anything else?

                                                                                                                          There might well be other things you want to know, and that will depend a lot on your cafe and on what issues you are facing. Making sure the voices of those that use the cafe are heard in this way can help you to keep your cafe fresh and appealing to as many people as possible. It will also give you good evidence to support any bids for funding or support you might make.

                                                                                                                          What about people with dementia and carers that don’t come to the cafe?

                                                                                                                          As already mentioned, some cafes report problems with static or dwindling membership, and with recruiting new members.

                                                                                                                          When you were setting up your cafe, you will have found out from people with dementia and carers what they needed. See ‘Working out what is needed’ above. You should consider repeating this exercise every so often to make sure that you hear from those you don’t yet know.

                                                                                                                          In this way you can make sure that not only does your cafe respond to what its members want, but to the wider community of people with dementia and carers as well.

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