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Designing residential environments for living better with dementia

Care providers need to move from a negative disabling approach to a more positive enabling mind-set that respecting residents as adults who have rich histories and can live meaningful lives. A ‘dementia friendly’ environment is argued to compensate for disability and should consider both the importance for the person with dementia of his/her experiences within the environment. Such environments aim at building on what people living with dementia, rather what they cannot do, allow them to experience the highest possible quality of life.  A literature on designing facilities for people with dementia, which has accumulated over the last 40 years, or so, provides support for the inclusion of a number of features into care homes that accommodate people with dementia. There is converging evidence that intelligent design of buildings, if regarded as a therapeutic resource, can promote well-being and functioning of people with dementia.

There has been increasing interest, overall, in the use of non-pharmacological interventions to improve dementia symptoms and the wellbeing of residents with dementia and their carers.  Previous studies examining modifications to the built environment have drawn from a number of design principles and frameworks for dementia care homes and suggest that purposeful design of one’s surroundings may play an active role in promoting a sense of well-being and improved functionality. The increased sensitivity of persons with dementia to environmental conditions occurs because the illness can reduce the individual’s ability to understand the implications of sensory experiences in residential care settings. As a result, agitated behaviours, increased confusion, delusions, and other psychiatric disturbances are readily triggered by environmental stimuli.

Inappropriate physical environment of the dining room is one of the most frequent concerns voiced by staff in nursing homes. Dining rooms are often loud and overstimulating places in care homes. In terms of physical environments, designs which provide balanced and controlled stimulation, and features that assist orientation, compensate for disability, and promote involvement in everyday activity are sought. With the aging population, research in home environments has developed a new focus of “environmental geriatrics” which includes professionals with backgrounds in anthropology, architecture, geography, occupational therapy, psychiatry, psychology, and other fields, as well as people living with dementia and caregivers. But dementia is not just about old people.

The focus of long-term care settings for the elderly has gradually changed from curing diseases to improving their quality of life, especially in countries which have been experiencing the aging of the population. In terms of the concept of care, the term “person-centered care” has already generated a lot of attention. Many terms (e.g., resident-centered care, individualised care, consumer-directed care, patient-centered care, self-directed care) share the same basic concepts and definitions. A person-centred approach is considered to emphasise residents’ unique personal preferences and needs in order to guide caregivers, thus enabling the individualisation of care plans and care routines to improve quality of life and compensate for their impairment. Person-centered dementia care requires shift in attitudes, behaviours, and systems replacing the traditional model of care that primarily focuses on the “tasks.” This is a best practice concept guiding efforts to improve residents’ quality of life in long-term care facilities. The care philosophy recognises that individuals have unique values, personal history, and personality.

Kitwood who advocated for the critical importance of personhood stressed the importance of taking a holistic perspective in relating to and caring with the person with dementia. For example, including a person with dementia in conversations at mealtimes would be considered as “positive person work”, as it contributes to recognising that person as a valued person. Dawn Brooker also illustrated Kitwood’s philosophy of person-centered care using a “VIPS” framework—“V” as valuing the individual as a full member of society, “I” as providing individualised approach, “P” as understanding the perspective of the person living with dementia, and “S” as providing a social environment that supports well-being of the person.

The environment needs to be able to support remaining ability rather than operate to diminish it, and to support the development and maintenance of relationships. The design of physical environments within residential aged care facilities (RACFs) can improve or worsen wellbeing in people with dementia irrespective of level of care from nursing staff. In Australia, the Building Quality for Residential Services Certification guides the building quality of RACFs in general, but this legislation does not offer any standards catered specifically to a person-centred dementia unit design. A groundbreaking assessment tool for the ward environment was developed in collaboration with NHS trusts participating in “The King’s Fund’s Enhancing the Healing Environment” (EHE) programme. Since then over 70 care organisations have been involved in field testing the tools. These tools have been informed by research evidence, best practice and over 300 survey responses from those who have used the tools in practice. Each of the sections draws on this evidence to develop a rationale for effecting change in care environments. This rationale also addresses, to some extent, the visuospatial experiences often associated with dementia. Making accommodations for the cognitive problems which people with dementia face is a fundamental aspect of overcoming disAbilities: for example the intelligent use of signage in care homes can make a tremendous difference. It’s also known, further, that intelligent use of colours and textures can enhance the lived experience of people living with dementia in residential care settings.

From the societal perspective care for dementia patients living in the community tends to cost more than care in nursing homes when functional impairment is controlled for. Care provided by family and friends in the community on the one hand saved costs of formal care but on the other hand cause informal care costs, which more than outweigh the savings (König et al., 2014). Innes, Kelly and Dincarslan (2011) have reported on a study to evaluate the reliability and validity of two tools: The Design Audit Tool and the Environmental Audit Tool developed to audit how dementia-friendly internal and external environments (specifically care homes) are for people with dementia. Analysis of the home reports identifies variation and variability in meeting “dementia-friendly principles” as specified by both tools. Areas of variability included wayfinding, the use of colour and contrast, access to outside spaces, individualisation of personal and communal spaces, lighting and opportunities to engage with the environment.

“Household model units” are often created from traditional ward type environments. They, for example, are distinguished by having approximately 16 residents, a functioning kitchen, their own front door entrance and a separation of the bedrooms from the main communal living rooms. There is a philosophy of facilitating “person-centred care”, as opposed to institutional routines, supported by a consistent team of care workers providing much of the unit management and decision making for each household. They encourage domestic style relationships between residents, staff and relatives.

On the other hand, the policy of “aging in place”, meaning the ability of individuals to remain in their home in the community, is a consistent wish and expectation of middle aged and older people. Home adaptations (environmental improvements, or in the disability legislation, reasonable adjustments) and assistive technology provision are an increasingly attractive means of helping older people to maintain their independence and enhancing their quality of life. There has been, frustratingly, little systematic research into the feasibility and cost of pursuing such a policy. The lack of definitive evidence of a link between the quality of the environment and the wellbeing of people with dementia living in that environment is somewhat surprising given the evidence that is available on the beneficial effects of specific environmental interventions. “Housing with care”, such as extra care and continuing care housing, is becoming a preferred alternative amongst commissioners of adult social care to care homes for people with dementia. Contemporary research suggests that many people with dementia can lead good quality lives in extra care housing, at least in the mild to moderate stages.

The availability of gardens or outdoor areas in residential homes may offer a range of benefits for people living well with dementia, including opportunities for active engagement with gardening, walking in an outdoor environment, and sitting in soothing surroundings.

The physical environment is therefore now emerging as an important determinant of psychosocial and health outcomes for older persons with dementia of the Alzheimer type and other dementias. Among demented residents of long-term care facilities, environmental factors have been linked to agitation, intellectual deterioration, orientation, and even sleep patterns. With more people with dementia living in care homes in the UK than ever before, there is growing recognition that the design of such internal and external spaces should meet dementia friendly principles. The availability of gardens or outdoor areas in residential homes may offer a range of benefits for people with dementia, including opportunities for active engagement with gardening, walking in an outdoor environment, and sitting in soothing surroundings.

This field is promisingly now moving fast, giving some meat to the bones of ‘dementia friendly communities’.

 

 

References

Innes A, Kelly F, Dincarslan O. Care home design for people with dementia: What do people with dementia and their family carers value? Aging Ment Health. 2011 Jul 1;15(5):548-56. doi: 10.1080/13607863.2011.556601.

König HH, Leicht H, Brettschneider C, Bachmann C, Bickel H, Fuchs A, Jessen F, Köhler M, Luppa M, Mösch E, Pentzek M, Werle J, Weyerer S, Wiese B, Scherer M, Maier W, Riedel-Heller SG; AgeCoDe Study Group. The costs of dementia from the societal perspective: is care provided in the community really cheaper than nursing home care? J Am Med Dir Assoc. 2014 Feb;15(2):117-26. doi: 10.1016/j.jamda.2013.10.003. Epub 2013 Dec 8.

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Housing: one of the forgotten social determinants of health and wellbeing for persons with dementia?

The way the ‘G8 dementia’ summit was articulated by politicians and the media was that we are on a ‘war footing’ against dementia, with military metaphors aplenty like ‘battle’ and ‘fight’. After the Second World War, the Labour Prime Minister Clement Attlee gave Aneurin Bevan responsibility for two tremendously sensitive posts: health and housing. Housing was crying out for attention. As a result of the war, Britain had several million bomb damaged houses in urgent need of attention and the public had been expecting the establishment of a national health service since the Beveridge report recommended one in 1942. Housing remains a huge issue in policy directions to improve the health and wellbeing of those 800,000 (or so) living with dementia in the UK.

In public health there is a growing acceptance that health is determined not merely by behavioural, biological and genetic factors, but also by a range of economic, environmental and social determinants. A safe environment, adequate income, meaningful roles in society, secure housing, higher level of education and social support within communities are associated with better health and wellbeing. It is these determinants that are generally known as the “social determinants of health”. Adequate housing means safe, secure and affordable shelter. Housing also provides the place where we connect with the wider community through education, employment, and community networks. Health inequalities are the ‘differences in health status or in the distribution of health determinants between different population groups’. Those differences are inequitable when they can be determined as being unfair or avoidable. The social determinants of health are the collective set of conditions in which people are born, grow up, live and work. These include housing, education, financial security, and the built environment as well as the health system. So unsurprisingly housing is critical for living well with dementia.

There is evidence of marked differences in health and social service use between old people with and without dementia. The hundreds of dementia diagnoses probably comprise the most important predictor of long-term care among old people. In a six-year follow up-study in Finland, 70% of women with dementia and 55% of men with dementia were institutionalised. The research evidence on hospital use is somewhat contradictory: some studies indicate that people with dementia are more likely, and others that they are less likely to be hospitalised than those without dementia. Hospital stays tend to be longer for people with dementia, and certainly constitute a large proportion of admissions ultimately in the elderly in hospital care.

Housing problems that impact on health can arise for five main reasons:

  • housing is not appropriately designed
  • housing is poorly located
  • housing is not secure
  • housing is not affordable
  • housing cannot be accessed at all.

Design for dementia is important because there are very substantial numbers of people with dementia living in every type of housing, and the numbers are increasing. It provides an exciting area in which multidisciplinary approaches can be fruitfully utilised, such as from architects, housing professions and neuroscientists. The levels of impairment experienced by different people will vary greatly. Some will be at the very early stages of dementia, and may not have even had a diagnosis. The issue of addressing “the diagnosis gap” is currently a powerful force within English dementia policy. Others will be seriously impaired and reliant on support from relatives or friends, perhaps supplemented by formal care at home. New housing should provide ‘lifetime’ or ‘barrier-free’ homes, embracing the principles of ‘universal design’. In keeping with this goal, the design process should address the needs of those with cognitive and behavioural impairment. Good design, many specialists feel, should begin at the inception of the project at sketch design stage.

Poor lighting can increase the incidence of hallucinations – especially if this creates lots of shadows. It is therefore important to be able to control both natural and electric lighting to prevent sharp variations in lighting levels, avoiding excessive brightness and shadowed areas. Furthermore, blinds can be useful for diffusing strong daylight, whilst for night time a simple bright central light source with carefully directed task lights are best. Many people with dementia will spend a lot of time simply looking out of the window, and if there is something to watch this can be life-enhancing. That is why it is often recommended that designers should try to ensure communal rooms have outdoor view of garden, and/or other locations where things are happening, e.g. a car park. Of course, expert opinions on such matters will vary, but it is a hallmark of an intelligent society that we can think about what could work best for people living with dementia. For many people, getting outside is possible and may be very important.

Prof June Andrews at Stirling, in “Dementia: finding housing solutions” (May 2013), describes that two-thirds of people with dementia live in their own homes or specialist housing, while one-third live in care homes. Most people with dementia say they would prefer to stay in their own home for as long as possible. Despite half of those who live in their own home living alone, the home can be the best place for someone to manage the consequences of dementia, particularly if accessible and adaptable housing to aid independent living. Adaptations, telecare, ambient assisted living and smart homes remain powerful constructs in English policy, reflected in a considerable R&D budget spend at EU level.

It is certainly an ambition for people with dementia to live independently and have access to support and advice services if they are diagnosed promptly. Many reach out to people living with dementia in the wider community, providing services such as floating support, assessment and delivery of adaptations and housing advice. The concept of a ‘dementia friendly community’ is indeed a wide-ranging one, but is not confined to a rather narrow scope of companies and corporations acting in such a way to be dementia-friendly to secure competitive advantage. It is hypothesised that dementia friendly communities will become one day in the planning and organisation of shared care in health and social care locally. When staff are equipped with the necessary skills, and there is continued investment in services, housing providers and home improvement agencies are able to assist with a wide range of housing choices for individuals with dementia. This includes making homes more accessible or more dementia-friendly or helping with moves to specialist housing. These organisations are also often able to help with day-to-day tasks such as shopping, household chores and organising domestic bills.

As an example, the Notting Hill Housing Trust in London has developed a dementia strategy, which sets out ways to raise awareness of dementia and encourage residents to seek help. The strategy has ensured their members of staff are informed about potential signs of dementia, which has led to innovation in practice and service delivery. Core to the strategy is a group of dementia champions who challenge colleagues and promote best practice. Housing organisations overall have a very good track record of providing specialist housing and delivering services that are designed to improve health and wellbeing, prevent falls and other accidents in the home and promote independence. Falls are of course hugely significant in the elderly, as individuals with osteoporosis in poor lighting conditions are particularly susceptible to hip fractures (which can lead to protracted hospitalisation). These housing services have been proven to prevent admission and readmission to hospital, allow rehabilitation after an accident or illness, delay the need for intensive care services and reduce the likelihood of emergency admissions.

One case study of an individual with dementia being supported to live independently in Extra Care housing highlighted savings of up to £17,222 a year to health and social care budgets. Housing organisations have also introduced assistive technology to ensure that people with dementia are able to stay independent and in familiar home environments. The report “”Extra Care” Housing and People with Dementia: A scoping review of the literature 1998-2008, Housing 21 (2009), on behalf of the Housing and Dementia Research Consortium with funding from Joseph Rowntree Foundation” by Rachael Dutton highlights the positive finding that there is mounting evidence that people with dementia living in ECH can have a good quality of life. However, the report also mentions“that some tenants with dementia can be at risk of loneliness, social isolation and discrimination.” Extra care can offer an effective alternative to residential care, and can delay or prevent the need for a move to nursing care. However, while many people with dementia have been able to remain in extra care housing until the end of their lives, “enabling all tenants, with or without dementia, to remain in place through to the end of their lives in extra care housing is not usually possible”.

Telecare solutions are a proven alternative to institutionalisation for people with dementia, helping individuals to retain independence and dignity and assisting their carers who might be unpaid family members, careworkers, or others. A range of sensors can be installed in the home, to support existing social care services, by managing environmental risks.  These sensors include a natural gas detector, carbon monoxide detector, flood detector, temperature extremes sensor, bed occupancy sensor and property exit sensor.  Should a sensor be activated, an alert is sent either to a monitoring centre or a nominated carer.  Telecare supports both safety in the home and security outside the home – where 60% of people with dementia experience the risk of ‘wandering’ dangers. Dementia can be distressing for carers, as it places them under immense pressure to help. This leads to the often hidden problem of carers suffering psychologically and financially themselves. Telecare can potentially help relieve some of this pressure – enabling carers to take a well-earned break, secure in the knowledge that they will be contacted immediately if needed. Technology can also help staff to provide a safe environment for someone through flood detection, gas shut-off systems, pagers, and medication alerts.

As a frontline service, all housing professionals work with people who have dementia, most likely in the earliest, sometimes undiagnosed, stage but also as the illness progresses. Housing professionals will also be involved where a person with dementia may be able to return home after a period in a health or social care setting following a period of crisis. Inevitably, national policy also emphasises the need for a timely diagnosis to be able to anticipate or prevent “crises”. There are therefore housing staff who work with tenants who would benefit from an understanding of what the dementias are, how to identify the features, and what to do next in terms of referral and/or discussion with health or social work colleagues.  However, there is no doubt that the approach of joining up health, wellbeing and housing is just the tip of the iceberg; there needs to be better awareness of the dementias generally, attention and resources for dementia-friendly communities, and a real attention to detail (such as design features and innovations of the home). But this is a marathon, rather than a sprint.

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