Reaching people affected by dementia and overcoming organisational ‘gatekeeping’

Reaching people affected by dementia and overcoming organisational ‘gatekeeping’

Suzanne Osborne

There were various reasons for trialling a drop-in located in a city centre:

• there were no other dementia related groups meeting in the city centre;
• Nottingham benefits from excellent public transport links, with buses, trams and trains all connecting in the city centre;
• although the location would require people to be willing and able to travel into the city (ruling out some people affected by dementia), the central location gave the opportunity for people to join from a much wider radius than a suburban location.

The initial session was well attended, with six people who had no previous engagement with Trent Dementia dropping in. As there was interest in continuing to meet, the charity began running a monthly Dementia Drop-In, starting in January 2023. Over fifty individuals have visited the Drop-In at some point since its launch, with each session attracting between 12 and 20 people affected by dementia, many of whom are regular attendees.

Go where people go

Reaching people affected by dementia can be a challenge. Whilst immediate thoughts might turn to hospital clinics and GP surgeries, the reality is that many people affected by dementia are not in regular contact with these services.

Similarly promoting services online may be seen as the best option. Indeed, I’ve observed a greater push towards ‘online only’ options since the COVID pandemic. But my experience says that many people affected by dementia aren’t trawling the internet or social media for dementia related support groups. What they, and their family and friends, are doing is living their lives, going to shops, libraries, places of faith, cultural and community centres. Prioritising online options can add to digital exclusion experienced by many people today.

Of course, it is important and necessary to promote services to healthcare professionals and social prescribers, and to have an online presence. But, with two-thirds of people who come to the Dementia Drop-In having seen a poster in a community setting, I have found that there is greater benefit to ‘go where people go’.

There’s a financial implication of getting posters into communities (printing, travel and staff costs) but, alongside reaching people affected by dementia, there are other benefits. There’s the opportunity to network and meet people, make connections and promote the organisation and its wider work. There’s also the opportunity for ‘cross-promotion’; seeing posters with information about activities and services from other organisations e.g. community groups and social prescribers, who can be followed up with at a later date.

There are also challenges. Some national retailers won’t display posters, some libraries don’t have display boards, and in the early days of promoting Dementia Drop-In some places wouldn’t display posters due to COVID measures.

What is organisational ‘gatekeeping’ and why might it exist?

I have sometimes felt a sense of ‘gatekeeping’ from some organisations, characterised by an inability to get their ‘buy-in’ and / or a lack of enthusiasm or interest in sharing information on the Dementia Drop-In with their communities.

From my experience, there are several possible reasons why organisational gatekeeping might occur:

• Changes in working patterns (more people working from home and less time in offices) since the COVID pandemic makes it harder to reach the right people in organisations who are interested, willing and able to support new initiatives like the Drop-In. Ironically, given my comments on ‘online only’ promotion earlier in this article, there’s also a lot of out-of-date information online, especially on self-help service databases, adding to the challenge of finding the right person in the right organisation;
• Information and work overload, overflowing inboxes, greater pressure on services and staff turnover all create less capacity for taking onboard new services;
• Cuts to funding and services and the challenges of the present funding landscape where more organisations are pitching for limited funds. Other providers may be seen as ‘competition’;
• A prescribed view as to what people affected by dementia want. At the request of regular attendees, the Drop-In offers a space to chat, with no activities. This has proven to be the right choice given the feedback we receive. Occasionally there is a speaker if it’s something the regular attendees want. However, having a speaker can disrupt the flow of the session, especially for first time visitors. I have found that when I’m asked what we ‘do’ at the Drop-In by some professionals, my answer seems to miss the mark for them, despite it being what the community of regular attendees want. Is this the difference between doing things with people rather than for them?

How organisational gatekeeping may be overcome

Having promoted and facilitated the Dementia Drop-In in Nottingham city centre for over three years, I have noticed a few things that have successfully addressed the challenge of organisational gatekeeping.

The first of these is the credibility that comes with time. I believe that, having consistently run a Dementia Drop-In every month for three years, it has gained credibility in many circles. Over the last year, I have seen an increase in enquiries from health and social care professionals and voluntary sector staff. These enquiries are not only for information on the Dementia Drop-In but also for other support available to people affected by dementia, including accessing benefits and other groups that might be helpful.

These enquiries can lead to the development of positive relationships, the second of my suggestions to overcome the challenge of gatekeeping. By this I mean a deeper relationship, developed over time, compared to one that might come from one-off ‘networking’.

Some examples of these relationships are as follows:

• A mutually beneficial relationship with an Admiral Nurse employed by a primary care network (PCN) in Nottingham City. Through occasional face to face meetings and plenty of emails, we have built a productive relationship. Many people she works with are desperate to get out and meet others in similar positions. Being able to refer people to the Dementia Drop-In, and other services offered by Trent Dementia including our walking groups and online craft group, allows her to offer access to the support some people are asking for. The Admiral Nurse displays posters for the Drop-In in all GP surgeries in her PCN, shares flyers for Trent Dementia’s services with people affected by dementia and included flyers for the Dementia Drop-In on her table at a Dementia Action Week event in a large supermarket in 2025;
• Proactive social prescribers, who have asked for updated posters for the Drop-In when the dates on the current ones have passed, and invited me to speak at a memory group for people from the African-Caribbean community;
• A researcher who works in a dementia clinic who, because of personal family experience, is keen to promote the Dementia Drop-In at the clinic.

Finally, I’ve recently developed a list of frequently asked questions that includes information on who the Drop -In is aimed at, what happens at the Drop-In and venue accessibility. By sharing this with health and social care professionals, voluntary sector staff and people affected by dementia, I’m hoping to remove some of the barriers that might exist around what to expect from the Drop-In.

Conclusion

My experience shows that there is great value in spending time ‘going where people go’. There is also value in thinking through your frequently asked questions, both to remove barriers that people affected by dementia and other organisations may have in their minds about your service, but also to help you distil the essence of the service you are offering for yourself. Knowing your service and the impact it’s having can be a persuasive factor in overcoming organisational gatekeeping.

First published in The Journal of Dementia Care, Vol 34 No 1 January/February 2026