Aspex Portsmouth Generate Case Study

Generate Case Study:

Inclusive arts & young onset dementia

About Generate As one of Aspex Portsmouth’s longest running programmes, Generate is an inclusive arts programme designed to support people living with dementia and their carers through creative practice.

Generate aims to provide greater access to artistic activities that support its participants’ mental and physical wellbeing.

The delivery of weekly arts workshops in a comfortable and supportive dementia-friendly space enables those vulnerable to or affected by low mood, decreasing confidence and social isolation, the opportunity to form part of a welcoming, inclusive support network. This in turn builds a more connected and understanding community.

Having developed a person-centred model, each participant is encouraged to work on their own project. Through bespoke support and guidance from artist facilitators trained to support people with dementia, participants build their confidence and develop their own distinctive style. The space is set up like an open studio, with each participant able to take ownership of their own activities and develop a sense of autonomy.

A common challenge participants often face is a realisation that they no longer have the same skills that they once had pre-diagnosis. Our tailored approach focuses on celebrating their current capabilities, as opposed to highlighting how their skills and functions have changed over time as a result of their diagnosis.

Participant Jo creates artwork at a Generate session.

In addition to the workshops, we host a self-run carers’ support group in our cafe. This support network enables carers to still be present in the building and in eye-sight of their loved one/ family member, but provides some much needed respite and an opportunity to talk and share with others who understand their situation. Over the years we have been running the programme, the carers’ group has been a lifeline to many of the participants, with strong friendships being made. Many still attend the group even if their loved one can no longer attend or has passed away, demonstrating the importance of the Generate programme.

The Case Study This case study refers to the experiences of Jo, shared by her husband Rob. Jo was diagnosed with a rare form of dementia at just 52. It quickly became apparent to her, and her husband Rob, that there were a lack of suitable resources available to people in their position. For example, reminiscence involving history or songs familiar to older people with dementia would mean nothing to Jo. Generate was the exception, however, because age is irrelevant in art.

The Office for Health Improvement and Disparities Clinical Commissioning Groups (CCGs) for 2020/21 present 46 recorded diagnoses of dementia under the age of 65 in Portsmouth.

People living with young onset dementia tend to have additional complexities, particularly regarding diagnosis and a lack of appropriate services.

Jo quickly became a beloved member of the group and achieved many fantastic milestones during her time in the programme, including having her artwork displayed on a billboard as part of a public art campaign.

Whilst, sadly, she is now unable to attend the sessions, Jo’s contribution to the programme is remembered fondly by everyone at Aspex Portsmouth.

According to the Portsmouth Hospitals University Trust (PHU) Dementia Strategy for 2022-2025, it is estimated that over 2,000 people are currently living with a diagnosis of dementia within South Eastern Hampshire.

Although dementia is most common in people over the age of 65, there is a growing prevalence of young onset dementia, with over 42,000 people estimated to be living with a diagnosis.

Jo in 2017. Jo was diagnosed with dementia the following year.

Jo & Rob’s Story My wife Jo was diagnosed with Posterior Cortical Atrophy (PCA) at just 52. PCA is an extremely rare form of dementia that affects vision, speech and balance as well as the things more commonly associated with dementia. The consultant estimated that by the time of her diagnosis she’d been living with dementia for 4 years; so from 2014, aged just 48.

At this time, there were very few places we could go to get support which wasn’t focused on an older age group. The Generate programme, however, was inclusive and one of the few activities available to Jo. Like me, Jo didn’t really have an artistic bone in her body, but she was nevertheless made very welcome by artist facilitators Abi and Roy. They helped her to produce artwork in her own individual style which, whilst unlikely to win any awards, has taken on a real significance to me now.

“I was particularly proud when one of her artworks was chosen for a billboard during a publicity campaign. The original artwork is now displayed in her nursing home room”.

Jo stands in front her artwork on display as part of a campaign across Portsmouth, 2022.

The encouragement and praise Jo received from Abi and Roy did wonders for her self esteem at an incredibly difficult time in her life, and the paintings she created are priceless to me.

Sadly Jo’s condition progressed rapidly to the point where she can no longer participate, but we do occasionally call in for coffee and are always made welcome.

Useful links & resources Rare Dementia Support - Posterior Cortical Atrophy (PCA) www.raredementiasupport.org/posterior-cortical-atrophy

Dementia UK - Young Onset Dementia

www.dementiauk.org/information-and-support/young-onset-dementia

Alzheimer’s Society - Young Onset Dementia

www.alzheimers.org.uk/about-dementia/types-dementia/young-onset-dementia

Alzheimer’s Research UK - Young Onset Dementia

www.alzheimersresearchuk.org/dementia-information/types-of-dementia/young-onset-dementia

Alzheimer’s Research UK - What is Posterior Cortical Atrophy?

www.alzheimersresearchuk.org/dementia-information/types-of-dementia/posterior-cortical-atrophy

Carers Support Groups in Portsmouth

www.portsmouth.gov.uk/wp-content/uploads/2020/05/hlth-carers-support-groups-in-portsmouth-area.pdf

Dementia Voices - Dementia Words Matter: Guidelines on Language and Dementia dementiavoices.org.uk/wp-content/uploads/2015/03/DEEP-Guide-Language.pdf

Getting started with art: A resource for carers of people with dementia aspex.org.uk/wp-content/uploads/2021/06/Carers-resource-.pdf

Alzheimer’s Society - Dementia Support Services www.alzheimers.org.uk/dementia-support-services

Younger People with Dementia www.ypwd.info

Young Dementia Network

www.youngdementianetwork.org

You can find out more about the Generate programme by heading to aspex.org.uk/generate