When supporting people with learning disabilities, it often takes knowing someone well to be able to spot changes that require professional medical assistance. Such was the case with Carla*, whose health started to deteriorate in 2019.
Carla moved to Merrington Grange in Shropshire in 2011, enjoying many adventures with her fellow housemates and support team over the years. These included concerts, holidays, day trips and working for a local dog’s trust charity. She was fully involved in choosing how to live her life and develop independence. But things had started to change.
Registered Manager Jacci Woodhouse and her team suspected dementia yet getting a diagnosis proved a challenge as the usual cognitive tests are not always suitable for people with Down’s Syndrome. Following diagnosis, Jacci and her team immediately sought assistance from professionals about how to support Carla with her changing needs and how she perceives her world.
Environmental adaptations
Making it her mission to find out as much as she could about the disease, Jacci made adaptations to Carla’s environment. She also sought advice from the community Occupational Therapist on mobility aids. Among the changes were a red toilet seat and shower tray to increase visibility, and removal of black doormats. Black floor areas can appear as a hole for people living with dementia. Replacing them with colourful ones helped Carla feel safer crossing the threshold.
Long-time connection
Jacci has worked at Merrington Grange for 12 years, starting as a Support Worker. However, her connection with Carla goes back decades as she taught Carla to ride when both were young women.
The knowledge gained from Carla’s situation formed the basis of Achieve together’s Dementia e-learning and subsequent face-to-face dementia training for all team members in support roles across the organisation.
Continued support
Covid was especially challenging for Carla, with familiar faces obscured by masks. Jacci and the team kept her reassured and focused on positive activities, despite her declining cognitive awareness and mobility. They also sourced and underwent new training on dysphagia and using a hoist to enable them to continue to give the best possible support.
In March 2023 Carla was admitted to hospital for aspiration pneumonia, considered to be at the end of her life. The Merrington team supported her during this time, ensuring continuity.
Best interests advocacy
When the hospital and social worker concluded that Merrington was no longer suitable to meet Carla’s care and support needs, Jacci challenged the decision. She advocated that Carla needed the familiarity of the surroundings and the team around her. The team knew her moods and could help her to hold onto her memories. She argued that it was not in Carla’s best interests to go to an unfamiliar place with strangers.
Determined to create the best possible environment for Carla, and confident that she could do so, Jacci advised that Merrington could adapt. They could provide for Carla’s increased nursing needs. By reviewing risk assessments, acquiring a profiling bed and hoist slings as well as additional training, the team created a person-centred, safe home for Carla to return to.
Finding solutions
The hard work of everyone in the team has allowed Carla to continue to live in her own room and re-integrate into her home.
Jacci said: “What is really lovely with Carla is that although she no longer speaks, I can tell she knows when I am there and talking to her. It really has shown me that we always need to keep people at the centre of what we do and find solutions in the face of health inequalities or when new challenges present themselves.”
Darryl Chapman award for health promotion
At our 2024 Heroes Awards, Jacci was joint winner of the Darryl Chapman award for health promotion. This award celebrates passionate and innovative promotion of the emotional, physical,
and psychological health of people we support.
On winning her award, Jacci commented: “I have to admit to being totally shocked at winning. I was very surprised and humbled to hear my name read out by the presenters.”
*name changed to protect identity
