Tuesday, 5 March 2024
Tuesday, 5 March 2024

Charity enhances support for Young-Onset Dementia Community

St George’s Hospital Charity has announced the successful continuation of its in-person support group for both people living with Young-Onset Dementia (YOD) and their carers, as well as its online carers group.

In the year ending 31 March 2023, the Charity awarded over £8,000 to sustain the in-person group for another year, ensuring continued assistance for those affected by this challenging condition.

Recognising the evolving needs of the YOD community, last year St George’s Hospital Charity granted £5,800 to start an online support group (specifically designed for carers of people living with YOD with complex needs). This new initiative aims to provide tailored support and resources to carers facing unique challenges.  After a successful first year, the Charity is now proud to announce the continuation of funding for this valuable group for another year.

To evaluate the impact of these support groups and how the services might be improved, the Charity conducted an online survey of the 128 individuals on the groups’ email list. With an overall response rate of two out of five (39%), from a mix of people living with YOD and from carers. The Charity releases its findings to coincide with Carers Week (6 – 12 June).

The survey results showcased the effectiveness of the support groups in various aspects. A remarkable 100% of carers agreed:

  • that the group sessions were of high quality
  • had increased their knowledge and understanding of the covered topics
  • made them feel less alone
  • that the groups made it easier for them to provide care, and
  • helped them access other available support services.

Moreover, participants noted that the groups facilitated caregiving, reduced feelings of isolation among both the carers and the people living with YOD and provided invaluable emotional support. Nine out of ten carers (96%) and four out of five people living with YOD (83%) said the groups made them more resilient, with some respondents stating that they ‘are energised by the meetings‘, that the ‘group’s energy gives us enthusiasm and resilience‘ and that they leave ‘not feeling so alone.’

Participants emphasised the groups’ role in providing access to crucial information and resources that surpass what is available online. Respondents appreciated the practical assistance offered, with practical help and materials shared after meetings, with some people saying that the ‘access to information and resources offered by this group for people with the condition has been invaluable‘, and that the ‘group has educated us beyond any information available online.‘ The impact of the support groups extended beyond the practical, as respondents expressed gratitude for the emotional support, enthusiasm, and resilience gained through participation. Numerous participants referred to the groups as ‘invaluable’ and even described them as ‘life savers.’

The survey also revealed several emerging themes. One notable theme highlighted the groups’ consistent support when formal medical assistance was lacking. Participants expressed deep appreciation for the leadership provided by Nikki Zimmerman and Elaine Eager, citing their knowledge, empathy, and embrace of innovative ideas as essential factors contributing to the success of the groups.

Nikki Zimmermann, YOD Support Group Facilitator, said:

“When we started these groups, we knew they were desperately needed by the YOD wider community, as there was limited or no support available for people whose lives have been affected by this condition. We also knew it would have a positive impact on the lives of the people who use it. I am bowled over by the unanimous feedback saying that we got it right and proud that we’re making a difference. I am also very humbled by the comments about myself and Elaine. The groups only work because everyone attending either needs help or can offer peer support. I’m so proud of them for continuing to engage with their groups and would like to thank St George’s Hospital Charity for agreeing to fund us for another year.”

Additionally, the in-person combined support group fostered an atmosphere of fun, friendship, and camaraderie. Participants cherished the laughter shared and friendships formed within the group. While these aspects were less prominent in the online complex needs carer Zoom group, it provided a unique space for carers to openly discuss their experiences, vent their frustrations, and learn from others without upsetting their loved ones.

Vivien Gunn, Head of Grants at St George’s Hospital Charity commented:

“St George’s Hospital Charity is dedicated to providing vital support and resources to the Young-Onset Dementia community. The success and impact of our in-person and online support groups are evident in the feedback we have received. We are incredibly proud of the positive difference these groups are making in the lives of individuals affected by this challenging condition.

“I would like to express my gratitude to Nikki Zimmermann, Elaine Eager, and the entire team for their outstanding leadership and unwavering commitment to this cause. Together, we are creating a supportive and inclusive community that offers hope, resilience, and a lifeline for those in need. It’s thanks to the generosity of our supporters and donors that we’re able to fund vital services such as these.”

The survey concluded with an overwhelming majority of respondents requesting continued funding for the support groups. Some participants suggested expanding funding and services or increasing the frequency of sessions from monthly to fortnightly, highlighting the groups’ indispensable role in their lives.

St George’s Hospital Charity remains committed to meeting the evolving needs of the YOD community and ensuring the continuity and growth of these vital support groups. The Charity would like to express its sincere gratitude to all participants, leaders, and supporters involved in making these initiatives possible.

In the last year, more than 50,000 people benefited from the work of the charity. We issued grants of £2.3 million across both St George’s and Queen Mary’s Hospitals. Just some of the projects we’ve funded include pain distraction devices for our children’s wards, bedside music every week to improve morale for long-stay inpatients, and over £400,000 invested towards three separate medical research studies to make a positive impact on patient care.

For more information about St George’s Hospital Charity and its initiatives, please visit: www.stgeorgeshospitalcharity.org.uk.


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