With an increased life expectancy for the general population as well as for those ageing with chronic diseases, there are major challenges to the affected individuals and their families, but also to health care and societal planning. Most important, an increasing proportion of older people remain living in their ordinary homes despite health decline and disability. Since the existing knowledge on the complexities of home and health along the process of ageing is based solely on general population samples, there is an urgent need to also study sub-groups with specific diagnoses.
Parkinson’s disease (PD) is one of the most common chronic neurodegenerative disorders, and the symptoms deteriorate over time, with increasing complexity. The average age at onset is 60 years, and people live for about 20 years with the disease. People with PD are more likely to move to assisted living facilities and at an earlier age [1
], and falls are among the leading reasons for nursing home admittance [2
]. This causes high costs to society [1
] and large consequences for those affected. Despite this, PD-studies that have systematically examined home and health dynamics are lacking, and older people are often excluded from PD-research [3
]. Consequently, there are knowledge gaps about the life situation for those ageing with PD, with a limited understanding concerning home and health dynamics in this sub-group of the population.
Although PD is characterized by four cardinal motor symptoms (i.e. tremor, bradykinesia, rigidity and postural instability [4
]), also non-motor symptoms are common, e.g. cognitive problems, depression and fatigue [5
]. Difficulties in performing activities of daily living are present even at the early stage of PD [6
], and about 75% have gait and balance problems [7
]. People with PD have an increased risk of falling (including experiencing near falls) than others of the same age, and a fear of falling is also more pronounced and common [9
]. Most of the falls occur indoors at home while walking or turning [12
]. People with PD also have disease-specific activity limitations caused by freezing of gait (FOG). FOG is associated with certain activities (e.g. turning) and environmental factors (e.g. being in a confined space), and it most commonly occurs in the home environment [13
]. Still, the knowledge on person-environment interactions among people ageing with PD and how such dynamics interact with the PD symptomatology is almost non-existing. Due to the negative consequences of PD on everyday life, PD-specific symptoms and problems need specific attention. This in particular since dopaminergic treatment strategies insufficiently tackle balance problems and people with PD also develop non-dopaminergic symptoms (e.g. falls, dementia). In order to increase the number of healthy life years despite the consequences of ageing with a chronic disease, efficient rehabilitation is of the utmost importance [14
]. There is, however, limited evidence for the efficacy of fall prevention [15
], housing adaptations and mobility device provision in people with PD. Moreover, even less is known about what is needed to support the development of adequate housing options and other kinds of societal support for people ageing with PD.
Turning to the conceptual and theoretical perspectives underpinning the present project, they represent a fusion of frameworks applied mainly in gerontology, health science and rehabilitation. In the ecological theory of ageing (ETA) [16
], the person is defined as a set of competencies and the environment is defined in terms of its demands (environmental press). When health declines the environmental pressure often exceeds the individual capacities, resulting in person-environment fit (P-E fit) problems and negative health outcomes. The International Classification of Functioning, Disability and Health (ICF) (WHO, 2001 [18
]) is commonly used as a conceptual framework to define and describe health and health-related outcomes. The main components of ICF are body function and structure, activity and participation, interacting with environmental and personal factors. According to the ICF, environmental factors do not only include the built and natural environment and assistive technologies (e.g. assistive devices [ADs]), but also factors such as support by others. To grasp the impact of disease, explicit knowledge is needed on how the interactions between a specific state of health and environmental factors affect the individual’s daily life. In a recent WHO and World bank report, the importance of focusing on accessibility issues and environmental barriers in order to promote activity and participation was put forward [19
]. Until now, PD-research has not focused on such issues.
Since no previous PD-studies have combined these perspectives, a set of preparatory and explorative studies were conducted as part of the planning process for the present project. Using data from an existing cross-national database [20
], the results suggest that very old people with self-reported PD (n=20) live in dwellings with more accessibility problems, perceive their home to be “less usable in relation to activities” and have significantly more unmet needs concerning assistive devices for personal care and protection, e.g. related to shower/bath, toileting [21
] than matched controls. That is, the results suggest that very old people with PD need specific attention regarding aspects of home, functional limitations and ADs. However, in order to generate valid results that can be generalized to people ageing with PD, longitudinal projects that involve participants with a confirmed PD diagnose are imperative.
The overall aim of the present project is to generate knowledge on home and health dynamics in people with PD, with an explicit attention to PD-specific symptomatology. In order to determine key issues of importance for the development of interventions that efficiently target the life situation of people ageing with PD, we will concentrate on aspects of home and health captured by state-of-the-art methodology from gerontology as well as PD-research, health science and rehabilitation. Examples of specific aims are:
To explore the interactions between perceived and objective aspects of home
To determine which functional limitations and physical environmental barriers that contribute the most to housing accessibility problems, and whether the contributing factors differ among fallers versus non fallers.
To identify which physical environmental barriers that induce the most accessibility problems among those with FOG and/or a fear of falling.
To define PD-specific aspects (motor and non-motor symptoms) that may hamper perceived usability of the home in relation to activity performance.
To identify the use and unmet needs for ADs and such changes over time
To determine how perceived and objective aspects of home are related to activity limitations and participation restrictions, and how such interactions evolve over time.