Information and Support Available to People Living with Dementia and their Carers After Diagnosis
Through this work we have heard of both the positive aspects of care and support provided to people living with dementia and their loved ones and also some of the struggles and issues encountered.
‘My memory…. I remember the past but can’t remember recent conversations …maybe I’ll remember fractions of that …. I can’t remember names but can remember things that have happened in the past… I’m just jogging along. I know what’s coming down the line and I’ve just got to do my best’
Person Living with Dementia
A diagnosis of dementia is life changing for the person living with dementia and their family and friends. Through engaging with 38 people living with dementia and 179 carers we heard powerful messages about the information and support that people need after a diagnosis of dementia.
There is a lack of consistency in the information and support that people living with dementia and their carers receive and this is influenced by the pathway through which they are diagnosed. They are not routinely offered referral to key services such as the Dementia Wellbeing Service and Worcestershire Association of Carers.
There is a lack of awareness of Care Plans and GP Annual Reviews. Implementation of these is patchy, yet they offer the potential to address some of the needs so clearly expressed by the voices that we have heard through our work.
There is some lack of understanding of the role of Adult Social Care, and how it can be of benefit in understanding and meeting people’s existing needs and planning for the future. Carers require support in navigating an unfamiliar care system regardless of their financial circumstances.
People need health and care services where staff understand the challenges that dementia presents, and services will make reasonable adjustments to accommodate them.
Activities and support in the community is highly valued, yet barriers to access exist which need to be addressed.
For many caring is a 24/7 role, which can significantly impact on carers own quality of life. Carers should not have to struggle to uncover care and support that should be available to them. Nor should they be further burdened by the difficulties people have reported navigating the system of health and care.
It is clear that while each person and their carer’s needs, experiences, and preferences are unique, they need to know that Worcestershire’s NHS and Care system is there for them, providing regular, proactive advice and support when needed, throughout this unpredictable journey.
Based on the feedback we heard we have made 51 recommendations to the Integrated Care System (ICS) who are responsible for planning and paying for all NHS funded hospital and community health services for Worcestershire. The ICS is a partnership of all NHS, Social Care and Voluntary Sector providers of publicly funded health and care services in our county.
We have requested a response to each recommendation, along with an action plan, which we will publish here when we receive it.
