Extra care housing can successfully meet the needs of people with dementia… but only if design for dementia is not simply an add on to ordinary provision

Policy makers and professionals are increasingly concerned about the impact of dementia on people’s lives and the services that support them. The numbers alone warrant this concern. Today there are 850,000 people in the UK with dementia (including 42,000 people below 65 years of age). This number is forecast to increase to more than one million by 2025 and more than two million by 2051. Dementia directly affects one in fourteen people who are aged 65 years and above.

Dementia is the term used to describe a set of symptoms that occur when the brain is affected by disease. Different people experience different symptoms with different consequences and with different needs, which change over time. Housing, technology and support must take account not only of these different and changing needs, but also of the fact ageing and dementia-related decline are separate processes – design for dementia cannot simply be an adjunct to design for older people.

One important objective of extra care housing is to provide opportunities for an individual based on principles of inclusion, choice and independence. This means that plans and interventions to support people with dementia must always honour their personhood and their right to be treated as a unique individual. However, there is a risk that well-intentioned housing and support can reinforce separation and isolation. This may be because of stigma or the possibility of negative reactions from neighbours and relatives, because design places safety and security above quality of life or because telecare and telehealth services lead to reduced social interaction.

If planning, design and delivery are all about the individual, it stands to reason that this coordination of functions and activities should begin at the earliest possible point in the process. The Integrated Service Area (ISA) network provides examples from across Europe of how this can be achieved. (Go to www.isa-platform.eu to find out more). ISA projects “model collaboration including housing providers, social workers, care providers, architects, researchers and local officials who have come together to support older people in their communities”. The objective of projects is to integrate housing into local communities, underpinned by coordinated, multi-disciplinary systems of support. A new extra care housing development provides the ideal opportunity to model such collaboration at a very early stage of the planning and implementation process.

Application of the principles and practice of co-design to the business of planning and implementing extra care housing should also help to build trust and confidence in the model. There is evidence that “co-design methods and tools can enable people living with dementia to make a significant contribution to society after diagnosis” (Rodgers P 2017). Co-design can not only add value to the project, but also enhance the lives of those taking part by “reconnecting people recently diagnosed with dementia to build their self-esteem, identity and dignity and keep the person with dementia connected to their local community” (Ibid).