Specialist Seating for Advanced Huntington’s Disease
Restoring Comfort, Safety and Quality of Life
Introduction
For individuals living with Huntington’s disease, specialist seating can become a critical component of care. The combination of involuntary movements, postural instability, communication difficulties and vulnerability to injury creates unique challenges that standard seating solutions are often unable to address.
This was the case for L, an individual living with advanced Huntington’s disease whose progressive needs had resulted in increasing risks associated with positioning, skin integrity and comfort. Following years of seating adaptations, equipment modifications and increasingly complex positioning challenges, an AlphaCare chair was trialled to determine whether it could provide the safety, support and comfort that L required.
The results were significant, delivering measurable benefits for both L and her care team.
Background: A Progressive and Complex Seating Journey
L has lived at her specialist care home since 2018. When she first moved in, she was independently mobile, fully verbal and able to access the community independently, regularly meeting friends, visiting cafés and going shopping. She is a mother of three and remains very close to her family, particularly her father, who visits regularly.
As Huntington’s disease progressed, L experienced increasing choreic movements, declining mobility and deteriorating communication. By 2022, her gait had become unsteady, falls were becoming more frequent, and her speech had begun to decline.
By 2023, L’s condition had advanced to the point where she was unable to walk unaided and was dependent on carers for all aspects of daily living and personal care. She became non-verbal, communicating primarily through body language and facial expressions, while distress was often expressed through crying and vocalisation.
Safety and Positioning Challenges
As her involuntary movements increased, maintaining a safe sitting position became increasingly difficult. A specialist chair was introduced, with various adaptations added over time, including:
- A contoured backrest
- Groin harness
- Channelled leg rest
- Additional padding to the base frame
Despite these interventions, L’s movements continued to create significant positioning challenges. On occasions she would choose to sit across the chair rather than in a conventional seated position. A multidisciplinary discussion concluded that this preference should be respected where possible, provided the groin harness remained in place to maintain safety. However, there were times when L was found arched across the chair with her head positioned downwards, presenting significant safety concerns. Additional positioning systems were trialled, including a chest harness, but these appeared to increase distress and were only used when the risk of injury became unavoidable.
Skin Integrity Concerns
One of the greatest challenges was protecting L’s skin. L has an underlying skin condition which leaves her particularly vulnerable to friction and subsequent infection. Her choreic movements repeatedly brought her into contact with chair surfaces and components, resulting in friction damage to multiple areas of her body including:
- Face
- Ears
- Neck
- Back
- Arms
- Legs
- Feet
In one particularly serious incident, involuntary movements displaced an armrest and exposed Velcro fastening, causing significant injury to her leg and resulting infection. Various modifications were attempted, including replacing coverings with heavy-duty vinyl, but injuries continued to occur. Within a six-month period, L required multiple courses of antibiotics due to infections arising from friction-related skin damage.
The Need for a Different Approach
In late 2025, a different specialist chair was introduced as part of the ongoing effort to meet L’s increasingly complex seating needs. It was hoped that the raised side panels, lateral supports and more enclosed seating environment would provide enhanced sensory feedback, helping L to feel more secure and potentially reducing the impact of her involuntary movements.
Initially, the chair appeared to offer the additional support that was being sought. However, it soon became evident that, despite the intended benefits, the design was not compatible with the nature and intensity of L’s choreic movements. The seat depth and firm side supports created leverage points that interacted negatively with her movement patterns, introducing new safety concerns. During use, a near-tip incident was observed, highlighting the potential risk associated with the chair.
This experience reinforced just how complex L’s seating requirements had become. Any seating solution would need to provide a delicate balance between postural support, sensory security, pressure management and robust safety, while also accommodating significant involuntary movement without introducing additional risks.
As a result, the chair was withdrawn immediately and L returned to her previous specialist seating system. By early 2026, it had become clear that a fundamentally different approach was required – one specifically designed to safely manage severe postural instability and involuntary movement while maintaining comfort, dignity and quality of life.
Why the AlphaCare Was Trialled
In March 2026, L began a trial of the AlphaCare chair.
The AlphaCare was specifically designed to support individuals with significant postural instability and involuntary movement patterns, making it particularly suited to the challenges presented by advanced Huntington’s disease. Several key features directly addressed L’s clinical needs.
- The chair’s linked seat and back recline function adjusts the seat angle as the back reclines, supporting pelvic positioning and reducing the risk of sliding. For L, this was particularly important given the difficulties she had maintaining a safe seated posture and the risk of moving into unsafe positions.
- Its contoured backrest promotes a midline posture, helping to improve stability while supporting physiological function and engagement. This provided additional support for L’s reduced trunk control and helped her maintain a more centred and secure position.
- Supportive armrests provide lateral proprioceptive feedback, enhancing feelings of security and contributing to improved positioning. For L, the additional sensory input appeared to promote a greater sense of security while accommodating her involuntary movements.
- The ergonomic block leg rest supports the lower limbs while promoting comfort and reducing physical effort. Its wide, supportive design also accommodated L’s movement patterns without introducing areas of potential injury.
- The chair’s Reflexion® foam seat and leg rest offer enhanced pressure management and protection for individuals with abnormal movement patterns or those who sit for longer periods. This was particularly relevant for L, who spends the majority of her day seated and is vulnerable to friction-related skin damage.
- From a safety perspective, the AlphaCare’s low centre of gravity and integrated design eliminate the risk of tipping, a particularly important consideration following a previous near-tip incident and L’s history of significant involuntary movement.
- In addition, the chair’s deep seat and snug seating dimensions provided sensory feedback that appeared to increase L’s sense of comfort and security.
Together, these features helped address longstanding concerns relating to friction injuries, positioning and overall safety.
Outcomes
The trial took place between 2nd and 6th March 2026. Throughout the assessment period, care staff and clinicians observed improvements across several key areas, including comfort, postural stability, safety, skin protection and overall wellbeing. These outcomes demonstrated the positive impact of providing a seating solution tailored to L’s complex and progressive needs.
Improved Positioning and Safety
One of the most significant outcomes of the trial was the chair’s ability to safely accommodate L’s involuntary movements while maintaining postural support and positioning. Staff observed that the impact of her choreic movements appeared reduced when seated, supporting greater stability and reducing the likelihood of unsafe positioning. The AlphaCare’s supportive design promoted postural alignment and pelvic stability, helping L maintain a safer and more secure seated posture throughout the day.
Distress-related vocalisations, which had previously occurred during both daytime and evening periods, were absent during the day and substantially reduced in the evenings. Alongside the improvements in positioning, these changes indicated improved tolerance of the seating system and increased comfort throughout the day. By promoting pelvic positioning and reducing the risk of sliding, the chair provided reassurance to staff and clinicians that L could maintain a safer seated posture throughout the day.
One member of staff observed:
“L spent the day seated in her new trial chair. She appeared very comfortable throughout, and the chair’s design provided good safety, preventing any risk of entrapment or skin damage. The snug, supportive fit allowed L to stretch out safely while maintaining an excellent seated position.”
Senior Nurse DR reported that the chair improved postural stability and promoted a greater sense of security. She also noted that the linked seat and back recline function supported pelvic positioning and helped reduce the risk of sliding or unsafe positioning within the chair.
Reduced Risk of Skin Damage and Infection
Protecting L’s skin had been a longstanding challenge due to her involuntary movements and underlying skin condition. By providing a more supportive seating environment and eliminating protruding components that could cause injury, the AlphaCare significantly reduced concerns relating to friction and shear.
Senior Nurse SW highlighted the ongoing impact that repeated friction injuries had on L’s health and wellbeing, noting that skin damage increased her risk of infection and contributed to unnecessary pain. Based on the trial outcomes, she concluded:
“I wholeheartedly agree that providing L with this new chair would greatly improve her safety, reduce the risk of friction injuries and infections. It would in turn greatly improve her quality of life.”
Improved Comfort and Wellbeing
Beyond the clinical benefits, staff observed a positive change in L’s overall wellbeing. She appeared more comfortable and content when seated in the AlphaCare, spending time listening to music and engaging more calmly with her surroundings. These observations were echoed by staff across the service, who consistently described L as appearing more relaxed and at ease when seated in the AlphaCare.
One member of staff reflected:
“I knocked on her door and said how nice her chair is and said she looks very comfortable. She gave me a lovely smile.”
Another observed:
“L appears very comfortable in her new chair and appears relaxed and is happy listening to music.”
The positive impact was also recognised by those closest to L. Family members noted a visible difference in her comfort and demeanour during the trial period:
“L’s dad is really hoping she will get the new chair back. He said she looked so much more comfy and chilled out in it.”
Potential Reduction in Medication
The benefits of the AlphaCare appeared to extend beyond positioning and comfort alone. Improvements in L’s comfort, safety and overall presentation led clinicians to identify the potential for wider positive outcomes.
Following his review, L’s GP, Dr JDS, described the chair as a significant improvement, commenting that L appeared more comfortable and settled and that the risk of friction injuries and distress appeared reduced. Most notably, he suggested:
“We may be able to reduce her PRN medication if this trend continues, this will include reductions of sedative medicines like diazepam and lorazepam.”
Conclusion
For L, the AlphaCare chair represented far more than a seating solution. Following years of increasing complexity, repeated chair modifications, ongoing friction injuries and increasingly complex seating challenges, the AlphaCare successfully addressed multiple clinical priorities simultaneously.
The chair provided improved postural stability, enhanced comfort, reduced distress, greater security and significantly reduced risk of friction-related injury. It enabled L to sit safely throughout the day while participating in meaningful activities, listening to music and spending time with family.
Most importantly, observations from staff, clinicians and family members consistently demonstrated an improvement in L’s comfort, relaxation and overall quality of life.
