New groups extend support for carers of people living with rare brain disease
UK charity PSPA has launched two new support groups for carers of people living with two rare brain diseases.
The two new online groups aim to extend the support the charity offers to carers of people living with Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD).
PSP & CBD are neurodegenerative conditions that over time cause problems with balance, speech, vision, swallowing and mobility. Currently there is no treatment and no cure.
In particular, the new groups, launched at the end of January, will provide support for carers of someone who is living with PSP or CBD and in long-term care, and recently bereaved carers.
As relatively unheard-of conditions, caring for someone living with PSP or CBD can feel isolating and overwhelming. By offering online support groups, PSPA provides carers with a safe space to connect with others living similar experiences, share information and tips, and make friends.
Regional support groups for people currently caring for a loved one living with PSP & CBD, launched in 2023. In 2024, 80% of attendees stated that attending the monthly group meetings improved their wellbeing. It is hoped the new groups for people living in long-term care and for recently bereaved carers will give similar benefits to people who attend.
Carol Amirghiasvand, PSPA’s Director of Service Development and Improvement, said “Understanding the impact of being diagnosed with rare conditions like PSP & CBD can reach beyond the individuals, and affect the whole family, we introduced Carers Support Groups in June 2023. These groups received an overwhelmingly positive response, we continued to develop groups in this area. First introducing a group for male carers last summer, and now groups for carers of people living in long-term care and recently bereaved carers.
“As progressive conditions, the burden of care can at times feel overwhelming. Although people often have family and friends they can talk to, support provided by people living similar experiences can ensure carers feel heard, understood and that they are not alone.
“We hope the two new groups, introduced this January, will continue to tailor the support we provide to the different family members and carers we help across the UK. We were pleased the first meetings of the groups attracted 11 carers of people living in long-term care and 20 recently bereaved carers. And we hope to extend the reach of the groups as more people learn about them.”
An attendee of the Support Group for Carers of people living in long-term care, commented on the first meeting: “It was lovely to hear from everyone. It can be a lonely place looking after a loved one with this awful condition and I feel less alone after this meeting. I look forward to our next meeting.”
The next meetings of the two new support groups will take place as follows:
Support Group for Carers of people with PSP & CBD living in long-term care: 27 February and 31 March.
Recently Bereaved Carers Support Group: 25 February and 25 March
More details about PSPA’s Carers Support Groups can be found at www.pspassociation.org.uk
Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD) are two rare neuro-degenerative diseases.
They are caused by the loss of neurons in certain parts of the brain. Over time, this leads to difficulties with balance, mobility, speech, vision, swallowing and cognition.
Both conditions are life limiting. There is no treatment and no cure.
Currently, around 60% of people living with either disease, are initially misdiagnosed with other conditions including Parkinson’s, stroke and depression.
PSPA is the only UK charity dedicated to creating a better future for every affected by PSP & CBD.
We will do this by:
• Providing information and support to enable families living with PSP & CBD to live their best possible lives
• Improving the quality of life for people living with the condition via research and awareness raising
• Putting the voice of the PSP & CBD community at the heart of what we do.
For more information please visit www.pspassociation.org.uk
