Small group meetings exist within RDS to create a sense of community and connection among those living with or caring for someone living with a rare dementia, and to explore specific topics and experiences. 

These small group meetings offer the opportunity for RDS members to meet in smaller numbers, and to have more in-depth discussions about issues which are of relevance and significance to them. 

If you would like to join a small group meeting, you will need to be a member of RDS. Becoming a member of RDS is free and only takes a few minutes to sign up. Once you have signed up, if you would like, a member of the Direct Support Team can get in touch with you to discuss the group meetings and help you navigate to the most appropriate meetings for you.

There are a number of small group meetings:

Monthly peer group meetings 

RDS is a community of people all touched by the diagnosis of a rare dementia. Our regular peer group meetings were established because many members of RDS living with a rare dementia said that they would like to meet others living with the same condition as themselves. We have seven disease specific groups.​ People living with a rare dementia are hosted in separate groups to the groups offered to carers.

Regular diagnosis specific peer groups run monthly, online and are facilitated by RDS staff members. 

These groups provide opportunities for groups of up to 12 members to meet via an online link, with a member of the RDS team facilitating the meeting. They are a community space and an opportunity to make important connections and talk to other people who affected by the same type of rare dementia. They offer a safe place to share experiences, ask questions and get support from others. The groups are an empowering space to share tips and strategies for living with the various symptoms and impact of a rare dementia. 

Regional Network Hubs 

By working in partnership, RDS is developing a growing network of Regional Metwork Hubs across the UK to ensure that people affected by rare dementias can access social, emotional and practical support within their own communities. These are locally-based, welcoming spaces where people living with a rare dementia, along with their family members, friends and carers, can meet once a month for connection, information and mutual support.

Each hub is shaped by local need and delivered in partnership with the local healthcare professionals and specialist organisations in local communities. Hubs are supported by RDS to ensure they reflect best practice, offer a safe and inclusive environment, and provide access to specialist knowledge about rare dementias. RDS Regional Network Hub meetings typically blend peer-to-peer and professional support, combining information and advice with the opportunity to meet others in a similar situation.

Regional Network Hubs hold in-person meetings across a variety of settings, providing informal social opportunities for people living with a diagnosis and their family, friends and carers. The RDS partnership model promotes:

• a relaxed, friendly and supportive environment
• opportunities to connect with others who understand the realities of rare dementias
• space to share experiences, ask questions and exchange practical advice
• activity sessions suited to the group
• access to specialist information and guidance, supported by RDS
• links to local services, organisations and healthcare professionals
• Above all, hubs aim to reduce isolation and help people feel part of a community that understands– close to home.

Our hubs include:

• Hertfordshire Regional Network Hub
• Kent Regional Network Hub
• Leicester Regional Network Hub
• Newcastle Regional Network Hub
• Powderham (Devon) Regional Network Hub
• South London Regional Network Hub (led ad funded by St George’s NHS Foundation Trust)
• Sussex Regional Network Hub (located in Brighton)

Coming in 2026-2027:

• Cornwall Regional Network Hub
• Salford/Manchester Regional Network Hub
• Cambridge Regional Network Hub
• Dublin Regional Network Hub
• Liverpool Regional Network Hub
• Sheffield Regional Network Hub
• Birmingham Regional Network Hub
• Bristol Regional Network Hub

For regional hub enquiries please contact RDS by emailing contact@raredementiasupport.org.

Themed group sessions

RDS runs themed group sessions and workshops to enable members to explore and learn about a particular issue or topic. For more information about these themed sessions and workshops email contact@raredementiasupport.org.

‘The Road Less Travelled’ sessions

‘The Road Less Travelled’ sessions have been developed by members of the RDS team, a researcher from the UCL Marie Curie Palliative Care Research Department and members of RDS to help the carers of people living with a rare dementia identify, better understand, and process various aspects of loss and grief that are experienced all along the journey with dementia. The sessions acknowledge the unique aspects and impact that a rare or young onset dementia entails.

Conversations are facilitated about a range of issues, including:

• what does grief and loss look and feel like for carers?

• exploring grief and loss in more detail

• living with loss and normalising grief– carrying on

• embracing identity– spouse, partner, parent, grandparent, child, friend, carer. Who am I now?

• the later stages of dementia and planning ahead

The Road Less Travelled forms part of the Starting Early, Talking Together research project run by RDS with Marie Curie, which is exploring how earlier conversations about living losses and future care can improve support for people living with rare dementias and their families.

Post-diagnostic support sessions

The post-diagnostic support sessions provide participants with information and guidance to help them navigate life after a dementia diagnosis.
Themes covered include: 

• learning about health professionals and services that can provide assistance
• support with planning for future needs and understanding the key questions to ask

Mid-stage support sessions

Mid-stage support sessions enable participants to:

• be aware of health professionals and community services available to provide assistance
• understand how to access support as a a person living with dementia moves through mid to late stages: practical, financial, legal and holistic
• plan for contingencies should the main carer become unwell or unavailable
• consider transitions from home care to respite and full time residential or nursing care
• access resources and checklists

Later stage carers sessions

Later stage carers sessions provide tailored information that is relevant to the care needs typically experienced in the later stages of dementia. The sessions help participants to develop knowledge and make informed decisions around complex and sensitive issues.

Themes covered include:

• sensory stimulation

• nutrition, diet and swallowing

• NHS continuing healthcare

• palliative care, pain management and end of life

• funeral planning and brain donation.

Monthly bereaved carer meetings 

Bereaved carer meetings are for people who have previously cared for someone living with a rare dementia diagnosis. The groups meet online every month and provide an opportunity to explore different types of reactions to grief and meet others in a similar situation.

Some members find these meetings helpful to attend as a ‘one-off’, to help gain a perspective following the death of someone they have cared for. Others attend multiple sessions, as they continue to find the confidential space to share experiences with others in a similar situation helpful.

Topics typically covered in these meetings include:

• terms and concepts – what do the words we use to describe grief mean?

• feelings and emotions – and an opportunity to reflect back on how we have felt, as well as how we feel now

• goals and the future – as we embrace a life without caring at the helm

Meetings for people living with autosomal dominant inherited dementia; familial Alzheimer’s disease (FAD) and familial frontotemporal dementia (fFTD)

Receiving a diagnosis of a genetic condition can have a significant impact on the person who carries the gene, as well as their family and friends. RDS facilitates a number of groups which are designed to offer support for people living with a disease causing gene, or at risk of inheriting one.

These include;

• the Annual Seminar for FAD or fFTD. These seminars are held in London, sometimes on a Saturday, and include a range of disease specific presentations, updates on research, and an opportunity to meet expert clinicians as well as other people living with, or at risk of living with a disease-causing gene
• monthly online peer support group meetings for people who are FAD or fFTD gene carriers. 

These groups are understandably sensitive in their nature and therefore are only available to RDS members after a support call with one of the Direct Support Team.

What should I expect?

The format varies across our small groups, where we encourage members to talk about whatever they would find most helpful, and large group meetings, which include speaker-led talks and Q&A sessions on a range of subjects. Our team are happy to discuss which meetings might be of most interest to you.

We strive to make these meetings as accessible as possible. They provide an opportunity to share stories and ask questions in a relaxed setting.

We want all participants to get the most out of the meetings and to make them sustainable and inclusive for all. To ensure the meetings run smoothly and meet the needs of our members we ask all participants to follow our Ground Rules for Groups and Meetings.

Many of our large group and virtual meetings are recorded and you can find recordings on the RDS YouTube channel.