|
Article Excerpt
Abstract: People with neurodegenerative disorders (NDD) who live in and want to remain in the community often have to modify their home or move to a new home to accommodate their changing needs. This paper examines the home environment as experienced by people with NDD, in terms of Lawton's theory of environmental gerontology, using data from a 2007 postal survey in Western Australia. The paper concludes that house design is clearly one of the factors involved in enabling people with NDD, and indeed frail people in general, to manage their physical difficulties and remain in their homes.
Keywords: Environmental gerontology, Frail aged, Home modifications, Housing, Neurodegenerative disorders, Universal design
Introduction
In the housing construction industry, there are a number of standards which recognize that, for the physically vulnerable, living conditions at home can improve if the house can be designed, or readily modified, to increase safety, functionality and comfort. Three such standards are Australia's adaptable housing design standard (Standards Australia, 1995), 'lifetime homes' standards in the United Kingdom (Office of Deputy Prime Minister (ODPM), 2003), and 'WoonKeur', a user-quality label for housing in the Netherlands that indicates barrier-free architectural design, supportive interior design, and technologically-advanced assistive devices (Englebert, 2005).
In Western Australia, however, these standards as well as other similar design approaches such as 'universal design', 'inclusive design', 'design for all' and 'age-friendly design' (Reber, 2007) tend nor to be used as mandatory reference points for either the building of new homes or the modification of existing homes (Karol, 2008). In this paper, all of these design approaches are referred to as accessible design. Whilst the lack of adherence to such accessible design is not an issue for able-bodied residents, it can be a serious issue for people who are frail, disabled or infirm, including people with neurodegenerative disorders (NDD).
Most people, who are diagnosed with a NDD, such as Multiple Sclerosis (MS), Motor Neurone Disease (MND), Parkinson's Disease (PD) and Huntington's Disease (HD), want to remain in their own home as their disorder progresses. However, for most of this group of people, their existing housing falls short of any of the aforementioned accessible design requirements. Whilst this is not a problem in the early stages of their disorder, when their mobility and ability to undertake activities of daily living (ADLs) (see Collin, Davies, Horne & Wade, 1988 for a detailed explanation of this metric) are not compromised, most individuals experience difficulties at home at later stages of their disorder.
In addition to considering functionality in the home, this group of people are under pressure to think about home support, transport and equipment in anticipation of deterioration in functioning even though the extent and speed of this deterioration is generally unknown. A key characterisric of NDD, which is frustrating to the individuals themselves, the health and allied health professionals who treat them and the agencies that support them, is uncerrainty. The hovering questions are - how will this disorder manifest and how will it affect daily living?
This paper examines data from a 2007 postal survey, in Western Australia, of the home support needs of people with NDD living in the community. The data include a number of socio-demographic and disorder-related characteristics as well as variables related to housing and equipment needs. Lawton's (1989) model of environmental gerontology is used as a framework for the discussion and is tested using the data.
Background
Accessible design is a concept of social inclusion to counter the limitations posed on numerous end-users by the general principle of designing for the 'average' end-user (Clarkson, Coleman, Keates, & Lebbon, 2003). It includes the concept of 'design' for ability' that promotes an approach to design that accommodates the needs of a diverse range of users. Accessible design can have an impact not only on the well-being of the individual, but also on the range of possibilities for home care providers, on the demand for institutional care and on the wider housing marker.
One group of end-users who can be disadvantaged in their home environment are people with NDD, diseases that are complex and pernicious. The onset of these disorders is insidious and, with the exception of Huntington's Disease, which is inherited, unexpected. Deterioration is progressive and becomes life limiting. Individuals with NDD are likely the how localized to generalized atrophy of brain cells, leading to compromises in both mental and physical function. Sufferers of NDD may become forgetful, have decreased mental capacity, become emotionally disturbed and/or develop speech impediments. Physically, patients can exhibit partial to complete incontinence, aspiration of food particles, tremor, poor balance, muscle rigidity, and/or muscle weakness or paralysis. These difficulties signal changed needs for structures, aids and equipment in the home as well as greater reliance on familiarity in moving about the home.
Some people with NDD have difficulty retaining their independence due to either their physical infirmity or a particular design aspect of their living environment. However, no studies of the home support needs of people...
|
