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Harnessing knowledge improves the quality of life for families of persons with dementia
Pohjoismainen kansanterveystieteen korkeakoulu, NHV/Nordic School of Public Health2012-06-13 12:35 EEST
A new doctoral thesis from the Nordic School of Public Health NHV claims that involving persons with dementia, their primary family carers and health care personnel in planning the services these families need improves the quality of life for them and enhances their chance of participating in society. According to Aud Johannessen, who is defending her thesis on 20 June 2012, the knowledge accumulated by these families, health care personnel and other supporting persons must be implemented and respected when developing services for persons with dementia and their families.
Aud Johannessen‘s thesis Dementia and Public Health – with focus on access to society presents an overview of current knowledge on how to improve the daily lives of persons with dementia and their carers, and how to increase these people’s participation in society. “Support contacts” can be one service to this process.
Support contacts are “paid friends”, who can be compared with respite carers, voluntary workers, or befrienders. They are not expensive, but they are not used as much as they could be under Norwegian health legislation. Johannessen explores the explanation for this: the barrier to the allocation and organization of support contacts to families with dementia in Norway lies in the knowledge, experience and understanding of local authority administrators, who are responsible for offering information to such families and managing the provision of support contact services to them.
But this is not the main or only factor that makes life difficult for caring families. Johannessen has interviewed 20 people diagnosed with dementia before the age of 65 years, 35 leaders from 32 local authorities and 19 support contacts. What she has heard has convinced her that support contact assistance is vital for people with dementia and for their primary family carers if they are to sustain the quality of their everyday lives. It is acknowledged that the local authorities have organized the caring tasks and the services that are available to some degree for families with dementia who could use a support contact.
"This service could be one of many that would contribute to maintaining the participation of these families in society", says Aud Johannessen. The thesis also shows that an educational intervention aimed at carers would be beneficial for them, and that the benefit would be enduring. With the experience of the first intervention a new intervention for primary carers of people with early-onset dementia was developed and it was shown that carers benefited from the new intervention.
The carers themselves put forward valuable proposals for further interventions. This thesis shows that the opinions of these families, of support contacts and of other health care personnel should not be overlooked when developing services to give families with dementia the chance to participate in society. In addition to her work at NHV with this doctoral thesis, Johannessen also work at the Ageing and Health, Norwegian Centre for Research, Education and Service Development, Vestfold Hospital Trust.