Case Study: Supporting an Adult Living with Down Syndrome, Alzheimer's Disease and Multiple Complex Health Needs

At Direct Homecare, we provide specialist support for adults living with complex and long-term health conditions, enabling them to remain safe, comfortable, and independent in their own homes. Our care is centred around each individual’s unique needs, while supporting the routines, choices, and lifestyle that are important to them.

This case study focuses on Carol, an adult living with Down syndrome, Alzheimer's disease, and multiple complex health conditions. Through personalised one-to-one homecare support, Carol is able to remain living safely in sheltered accommodation alongside her sister, receiving the specialist care she requires while maintaining her comfort, dignity, and quality of life.

Background

Carol lives with Down syndrome alongside confirmed Alzheimer's disease, learning disabilities, impaired cognition, dysphagia (swallowing difficulties), chronic kidney disease, cervical spondylosis and stenosis, depression and anxiety. She also have a history of deep vein thrombosis (DVT), jaw locking and dislocation, total urinary and faecal incontinence, and an active Grade 2 pressure ulcer following a previous Grade 4 pressure injury.

She lives in sheltered accommodation with her sister, who is their primary carer, nominated appointee, and main point of contact. Her involvement is central to ensuring continuity of care and supporting decisions made in Carol's best interests.

Communication presents additional challenges. Carol mainly communicates in Portuguese and has limited understanding, making it difficult for her verbally express pain, discomfort, hunger, thirst, or emotional distress. Instead, carers carefully observe her facial expressions, her body language, changes in behaviour, and refusal of care to understand their needs.

Following advice from the District Nursing team, Carol is currently bed-based and relies entirely on carers for every aspect of daily living. Her care focuses not only on managing complex medical conditions but also on maintaining comfort, dignity, and emotional wellbeing.

Goals Identified

The personalised care plan was developed to achieve several key objectives:

• Maintain skin integrity and promote healing of the active pressure ulcer.
• Support safe nutrition and hydration while reducing the risk of aspiration.
• Deliver safe, dignified bed-based care.
• Prevent avoidable complications including pressure damage, infection, dehydration, choking, and medication-related risks.
• Improve communication through calm reassurance, simple language, and Portuguese where possible.
• Deliver person-centred care while working closely with Carol's sister and wider healthcare team.

Interventions & Support Provided

A comprehensive complex care package was introduced to provide full support with personal care, continence care, nutrition, hydration, repositioning, communication, and ongoing health monitoring.

Protecting skin integrity became a major priority. As advised by the District Nurse, Carol remained bed-based while carers carried out regular repositioning, thorough skin inspections, and pressure area care to support wound healing and reduce the risk of further skin breakdown.

Due to her swallowing difficulties, all meals were prepared in accordance with professional guidance using a Level 4 purée diet alongside Level 0 thin fluids. Staff provided full assistance during mealtimes, carefully monitoring for signs of swallowing difficulty while ensuring nutritional and hydration needs were safely met.

Communication was tailored to Carol's needs through calm reassurance, simple language, and the use of Portuguese whenever possible. As verbal communication was limited, carers became highly skilled at recognising non-verbal cues, enabling them to respond quickly to discomfort, anxiety, or changes in her health.

Medication management remained the responsibility of Carol's sister while Direct Homecare staff completed specialist medication competency training. Throughout the care package, carers maintained close observation of the Carol's overall wellbeing, promptly escalating any concerns to healthcare professionals to ensure timely intervention whenever required.

Outcomes Achieved

• Through consistent, person-centred support, the care package has delivered several positive outcomes.
• Regular repositioning, vigilant skin monitoring, and adherence to professional guidance have supported healing of the pressure ulcer while reducing the risk of further pressure damage.
• Following specialist swallowing recommendations has enabled safer nutrition and hydration, significantly reducing the risks associated with aspiration and choking.
• Personalised communication strategies have helped reduce anxiety, improve reassurance, and allowed carers to better understand Carol's non-verbal communication, leading to more responsive and compassionate care.
• Strong collaboration between Direct Homecare, the individual's sister, District Nurses, and the wider multidisciplinary team has ensured continuity of care and that every intervention has remained focused on Carol's best interests.

Carol's case highlights how specialist complex care from Direct Homecare can support adults living with multiple complex physical, cognitive, and communication needs to remain safe, comfortable, and well cared for at home. Through a highly personalised and compassionate approach, Carol has been able to continue receiving the specialist support they require within familiar surroundings, while maintaining continuity of care alongside their sister and wider healthcare team.

By combining specialist clinical care with a strong commitment to dignity, comfort, and person-centred practice, this care package promotes both physical wellbeing and quality of life.It enables Carol to remain in the place she knows best, receiving safe, compassionate care that is tailored to their changing needs while supporting the people who matter most to them.

To learn more about our services or to speak with a member of our team, please visit our Homecare Services page or by contact a member of our team.