International experiences of post-diagnostic support

As part of the Forward with Dementia/Cognisance research project, a survey was conducted with people recently diagnosed with dementia and informal carergivers. This research was undertaken in the five countries involved in the project: Australia, Canada, the Netherlands, Poland and the United Kingdom. The survey explored people with dementia and carer’s experiences with support provided after diagnosis.

Results of the survey:

• A total of 90 people living with dementia and 300 carers participated in the survey.
• Close to 70% of survey participants felt that support following diagnosis helped them deal more efficiently with their concerns.
• However, close to a third of participants were dissatisfied with the information they received at diagnosis, including information about management, prognosis, and strategies for living positively.
• Only a few people with dementia (22%) and carers (35%) received a structured plan to help them manage.
• People with dementia were more often satisfied with information, had more often confidence in their ability to live well with dementia, but were less often satisfied with access to care compared to carers.

The findings indicate that the provision of support following diagnosis can be improved. They also show people with dementia and carers can differ in their experiences of support.

The survey results were recently published in the International Journal of Geriatric Psychiatry: Experiences of people with dementia and informal caregivers with post-diagnostic support: Data from the international COGNISANCE study

These results also helped to inform the development of the Forward with Dementia project and campaign activities in each country.

We extend sincere thanks to the people living with dementia and informal caregivers who generously gave their time and expertise to contribute to these findings.