Dementia is an incurable progressive illness that affects millions of people around the world, their families and the wider society. A number of conditions have been identified as causing dementia, Alzheimer disease and vascular disease being the two main ones. Although dementia mainly affects people over 65 years old, it is not a normal part of ageing. It can affect people in different ways, but typically some functions are likely to be changed or lost and the person with dementia will gradually lose the ability to understand, appreciate and reason. For that reason, people with dementia need a great deal of support. Their level of needs and assistance is likely to rise as the disease progresses.
Some of the symptoms people with dementia are likely to present are: memory loss, wandering, disorientation, inability to concentrate and learn, inability to recognise family and friends, sleep disturbances, withdrawal, confusion, inability to provide self-care, incontinence, decreased mobility and falls, lack of inhibition, impaired communication, repetitive disruptive vocalizations, difficulties in feeding and self-care. Apart from the cognitive symptoms, behavioural problems are common: delusions, depression, hallucinations, paranoia, agitation, physical violence, wandering. These can contribute significantly to decreased quality of life for the patient and may result in increased burden for the carer, which can sometimes lead to the sufferer being hospitalised. Carers of people with dementia are found to carry more burden than carers of other chronically ill patients and also have significantly higher risk of depression than the general population.
Many interventions have been designed and implemented to support people with dementia and their families in hospitals, residential settings and in the community. As people with dementia and their families spend most of their time indoor, home can be of primary importance. Home becomes the main setting of care, which is supported by current policies. Examining how we can create a dementia-friendly home environment is a simple and often inexpensive approach that can offer the opportunity to a person with dementia and their caregivers to live in a safe and comfortable environment.
Following a systematic synthesis of the existing literature and visiting family caregivers of people with dementia in their home, my research indicated that:
- Home is a dynamic concept constantly readjusting in relationship to age, health and life events. Since different types of dementia affect different functions (memory, attention, speech, vision, mobility), home becomes a mnemonic device helping people with dementia to remain independent longer. The home environment is also very important for family caregivers of people with dementia and helps them to hold to their memories, “I can’t imagine living anywhere else; we’ve adapted my husband’s illness to fit in the house really”, explained a 69-year-old female caregiver during our interview. Due to the ongoing and unpredictable nature of dementia, there should be different levels of individualised environmental support. Otherwise, an inappropriate home environment may force caregivers to relocate to a more supportive residence. What is required is flexible living spaces to accommodate changes over their lifetime with minimal possible cost, modifications and stress involved.
There is a need to raise awareness and educate family caregivers and professional (commissioners, health, social and allied health professionals, housing and design professionals) around the home tensions and manipulations. When modifying the home environment to support and promote independence for a person with dementia, it can sometimes destabilise symbolic meanings of home for the co-resident caregivers with great impact on their wellbeing. It can be a great challenge to marry together aspects that are perceived as important for people with dementia but also those of the co-resident caregiver(s). In this sense, a house can cease to be a home and the meaning of home may change profoundly as dementia progresses. A home that was once a haven may be experienced as a sterile hospital scene and/or even a prison, “I could say [home is] like a prison now really… because you are trapped in here a lot”, stated a 62-year-old female caregiver. My research indicated that caregivers need space and their own place at home to carry on caring and hold their identity beyond simply being a caregiver. They need spaces for personalisation and escape. The creation of an escape room may be a cost-effective indoor respite strategy.
In creating a dementia-friendly home, there are a number of important architectural and design aspects to consider in advance. A small or old property, lack of personal space, steep stairs, not easily accessible toilet, lack of natural light, lack of visual and acoustic connections are all seen as difficulties by the majority of caregivers. An appropriate home was the one with adequate natural light and size (with at least two bedrooms or space for escape), suitable layout (preferably stair-free, toilet on each level), easy accessibility to important areas (e.g. bedroom, toilet, outside space) and proximity of rooms (bathroom - main bedroom, main - second bedroom).