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Patient information

Carer information

Professional information

Background to the project

  • The overall prevalence of Parkinsonís disease is currently estimated to be similar across all European countries. Although the disease affects younger people, its prevalence increases sharply with advancing age and it is estimated that 1.6 per 100 people over 65 years of age suffer from Parkinsonís disease, (de Rijk et al. 1997). This increases sharply to 3.7 per 100 in those over 75 years and to 5.0 per 100 in those aged 80 years and over. 

  • Thus the disease and its management has significant implications for current health and social care resources in relation to older people and the future impact of Parkinsonís disease as a public health issue is even more significant with the ageing of Europeís population. By 2050, over 100 million people will be over 65 years of age while the number of people over 80 years will rise to 48 million, suggesting an estimated 3-4 million older people with Parkinsonís disease and at least double that number of family members and friends directly involved with day to day care. Thus the development of more resource-efficient strategies, which will better enable older people with disabilities, and their carers, to adjust and manage their daily living will assume increasing importance.

The effects of chronic disabling illnesses


  • As well as the physical limitations, chronic disabling illnesses tend also to impact on communication, social integration, psychological and emotional well-being, often resulting in increasing depression, boredom and isolation on the part of the sufferer and his/her family and friends. Despite the role of family and friends being recognised as important, little research has been undertaken in relation to their particular perceptions and needs. Informal carers of all older people are given little training for their role, despite the major burden of care being placed upon them. Many carers are themselves frail and elderly with their own health and social care needs.

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Expected Achievements

Learning from users

  • By exploring the experiences of older sufferers and their carers throughout the range of disease stages, this study will create a critical mass of knowledge and understanding and provide insight into the overall effects on everyday life and well-being of those who have to learn to live with this and other conditions in the later stages of their lives.The belief that the patient (and their carer) are the true experts has guided the development of this project.

Informing people


  • While many professionals genuinely believe they are meeting information needs, research suggests that patients and carers receive neither the amount nor the type of information they want. This particularly applies to older people who are usually seen as less demanding. There is very little research, however, which compares and contrasts patient perceptions of both the information-giving and clinical decision-making processes, with those of professionals. That which does exist suggests discrepancies in perceptions of particular episodes of care. A growing body of evidence suggests there are many positive effects of giving information to patients. Openness also enhances feelings of respect and the ability to cope, both vital to the well-being.


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  • Despite increasing attention being paid to patient empowerment and involvement in health care decision-making, it is currently difficult to make meaningful comparisons and draw useful conclusions. This is particularly the case with older people who tend to be more acquiescent in professional interactions. Failure to clarify the nature of the patient/professional relationships results in the terms being used loosely to denote a whole range of processes and relationships in patient/carer/professional interaction. 

  • There is also limited research on the psycho-social effects of Parkinsonís disease and in particular on the degree of control experienced by sufferers. This loss of control contributes significantly to the incidence of depression in this client group (Anderson, 1999) and this assumption could reasonably be transferred to people with other chronic disabling disorders. 

Exploring new knowledge to promote better practice


  • Literature  on the Quality of Life of people with Parkinsonís disease and of their carers, is increasing, however few studies identify the different needs at different disease stages. Also, none compare perceptions of patients/carers and professionals involved in care. 

  • Initiatives for providing information start from an assumption about the information that is required; the form in which it is preferred; and why it is needed, however, many people still receive less information than they want or need and are less involved in decision making than they find acceptable. 


  • Today, a variety of sources of information exist, but ensuring that it is in an acceptable format, that it facilitates understanding, is accurate and unbiased, poses a considerable challenge to health professionals. There is also evidence that what individuals wish to know is not necessarily what professionals think they should know. This study will address and provide models of best practice in this area.


  • There is a growing need for closer collaboration between all health and social care professions and teamwork is an essential factor in achieving a patient/client focused approach to care, especially when the patient experience informs continuing professional development initiatives. Educational packages for patients, carers and health & social care professionals will form a constructive and effective template for such collaborative education.

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This site has been established for the dissemination of information. While every effort is made to ensure that information on this site is accurate and current we accept no liability for any omissions or inaccuracies that may have crept in. If in any doubt please contact your doctor for further advice.

Last Modified 13 August 2004
Maintained by Matthew Harris