Dementia care: from guesswork to guidance

In some parts of the UK, over 40 per cent of people living with dementia in residential care homes are prescribed antipsychotics. Behind that are carers who are struggling to do their best without the right support.

Every day in dementia care settings across the nation, carers face challenges in responding to moments of crisis when the individuals they care for experience distressed behaviours. Distressed behaviours often include shouting or attempting to harm themselves or others, pacing restlessly, or becoming silent and withdrawn. For carers, these behaviours are not just challenging to respond to, they can often be upsetting and emotionally draining. Families, too, watch helplessly as their loved ones become distressed in ways that feel sudden, severe, and heartbreaking, until they are unrecognisable. In reality, these moments are rarely random. They are signs of unmet needs that get lost in translation from the person living with dementia to those who care for them, expressed in the only way they may still know how.

Despite the best intentions of frontline carers and family caregivers, current systems often fall short in providing effective levels of support. Behaviour support is extremely limited, carer training is inconsistent, and real-time solutions from professionals in the field are almost non-existent. As a result, many care homes turn to antipsychotic medication intended for short-term use, but it is often continued indefinitely despite well-documented risks including increased confusion, falls, and even early death. Meanwhile, carers themselves are experiencing significant burnout, resulting in placement breakdowns, poor quality of life for the person with dementia and the caregiver, high staff churn rates, and mounting costs.