From April 2003 to August 2005
Project Leader(s): Dr Nick Miller
Staff: D Burn, A Jones, E Noble, L Allcock, A Hildreth
Contact: Dr Nick Miller
Partners: Parkinson's Disease Society
The project aimed to establish how many people with Parkinson's disease (PD) experience speech, voice and swallowing problems; what the nature of these problems might be in terms of alterations to key elements in speech production (e.g. loudness; intonation; articulation of individual sounds), and importantly to evaluate what impact such changes have on the speaker and their family.
We recruited 140 people with Parkinson's and groups of matched people without Parkinson's. On objective instrumental assessments we could demonstrate change in almost 100% of participants with PD in vocal cord functioning and tongue and lip movement. These changes did not necessarily lead to an effect on intelligibility or impression of speech disorder by strangers. The pattern of changes in swallowing was similar.
The patterns of impact, however, were highly variable across individuals. Some felt very little impact of changes, while for others similar amounts of change on clinical measures brought maximal impact. With few notable exceptions participants’ impressions were that changes in communication were for the worse. Degree of impact did not relate in a direct way to the extent of underlying voice-speech changes, nor to level of intelligibility, and nor to stage and duration of PD.
Indepth interviews helped uncover several reasons why this might be so. Different people developed different strategies to compensate for and cope with changes. Some of these were 'positive' in that they were directed at continued participation in roles and activities; others were less positive, in as far as they avoided issues rather than cope with them head on. Also apparent was that individuals could be highly active in how they managed impact, utilising their energy, residual abilities and support of others in a strategic way to succeed in communicating when they really needed to, but conserving energy on other occasions. Changes might be in one individual, but impact could affect the whole family. At the same time attitudes and practices in the wider family could be crucial variables in determining who coped and how. There were valuable lessons learned that might be used to support others who have had more difficulty coping. The same applied to swallowing changes.
A main message of the project centres on the non 1:1 relationship between objective measures and nature and impact of changes. Professionals should be aware that absence of an overt intelligibility problem does not necessarily equate with absence of negatively perceived changes and when considering referral to and content of support services this needs to be acknowledged.
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Professor Nick Miller
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