News

New Report Gives a Voice to People Living With Dementia in Wales

14.3.16

The Older People’s Commissioner for Wales is calling for action to be taken by public services across Wales to ensure that people living with dementia and those who care for them can access the services, support, information and advice that they need, following the publication of a new report: Dementia – More than just Memory Loss.

The report captures the voices of people living with dementia and their carers from across Wales, who took part in individual interviews and focus group sessions to share their experiences and the challenges they face in many aspects of their day-to-day lives.

The report found that, despite progress in recent years, there is still a lack of knowledge and understanding of dementia, both amongst professionals and wider society, and that dementia services often lack the flexibility to effectively meet the needs of people living with dementia and their carers. Furthermore, a lack of co-operation between services creates unnecessary difficulties and barriers for people living with dementia and their carers, and there are still significant variations across Wales in the quality of services available.

Older People’s Commissioner for Wales, Sarah Rochira, said: “Dementia is a devastating illness and its impact is almost impossible to imagine. That is why it’s essential to listen to the voices of the people who have highlighted the huge range of challenges they have faced in accessing the services, support, information and advice that can make a big difference to their lives.

“This report clearly sets out what action needs to be taken by those providing public services to ensure that people living with dementia can have the best quality of life for as long as possible. Delivering this change is not only good for people living with dementia and their carers, but also good for the public purse."

The report sets out a number of actions that need to be delivered to address the issues identified by the research, including work to ensure that primary care services are more dementia supportive and their working practices reflect the needs of people living with dementia and their carers; training for staff to ensure they have sufficient knowledge and understanding to respond to the needs of a person living with dementia in an appropriate and sensitive manner that protects their dignity and respect and minimises distress; and greater post-diagnosis support, including a single point of contact to provide information and advice on the services and support available that can be accessed whenever required.

The Commissioner will be writing to public service leaders across Wales, seeking assurances that they will deliver the change required on behalf of people living with dementia and their carers and will undertake a programme of follow-up work to ensure public services are delivering upon their commitments.

The research on which the report is based was undertaken by Age Cymru who interviewed people across Wales who are living with dementia, as well as those who care for them, and conducted several focus group sessions on behalf of the Commissioner.

Ian Thomas, Chief Executive of Age Cymru, said: “Dementia is often a cruel illness, both for the person it affects and for everyone around them. In carrying out the research behind Dementia - More than just memory loss we were privileged to be given access to the views and experiences of people with dementia and their carers from across Wales.

“What we heard was a powerful story of the challenges that face many people affected by dementia and the improvements that need to be made by those who provide services.

“This research was a rewarding experience for everyone involved at Age Cymru and we are extremely grateful to every person who shared their time and experiences with us. I hope that we have done justice to people whose strength and desire for change were so inspirational to our team."

The Commissioner added: “I’d like to thank everyone who participated in this research and so generously shared with me their experiences, often very personal experiences, and the difficulties they have faced during what is often a very distressing time.

“By listening to their voices and taking the action set out in my report to deliver the required change, public services have a real opportunity to get things right, transforming a system that has, to date, unfortunately fallen below the high standards we should expect for people living with dementia and those who care for them.”

Click here to download the 'Dementia: more than just memory loss' report