A roundabout without signposts - people's experiences of dementia in Suffolk

Healthwatch Suffolk worked with the Dementia Action Partnership to develop a research project exploring the experience people with dementia, and their carers, have of accessing health and care services in Suffolk.  They spoke to 156 people via interviews, feedback forms and feedback centre comments.

Family carers want to be listened to and taken seriously when they ask for help– this includes health professionals doing things differently to support them or their relative in getting a diagnosis and addressing any language or cultural issues.

Families want services that talk and communicate with each other and with them.

A dementia diagnosis can be unexpected, alarming, and life-changing. Professionals must make sure that any diagnosis is communicated in a compassionate and supportive way

People need to be consistently referred to the dementia support service (Dementia Connect) at the earliest opportunity – at time of diagnosis, if not before.

People need to know that they can self-refer for help and support. Many people were unclear about how to access the service.

People need to be consistently informed about what the service provides, and that it is not only available to those with a diagnosis.

People want individualised support, that is proactive in contacting families and offers emotional and practical support.

People want advice on technological solutions that can help them live independently with dementia.

There needs to be a different approach to providing support for people with Early onset dementia. The issues or challenges they face are very different to those for older people.

People need to be able to access their annual review after a diagnosis of dementia.

People need, and should expect, compassionate responses from their health and care professionals.

People want health professionals to make reasonable adjustments to accommodate the needs of the person with dementia and their family carers.

People need GPs, practice staff and other professionals to help them to access other support by proactively referring, as appropriate.

People need more information about how social care can help them, what support they might be eligible for and how to access social care - they need this information earlier.

Self funders need as much support in finding social care support as those who are funded through the local authority.

Homecare providers need to work with families to build trusted relationships. Continuity of care is crucial to the success of homecare for people with dementia.

People need to understand what they can do if they have concerns about the care being provided to their relative (either homecare or care home). Providers must make this information clear, and be prepared to engage with people if they have a concern.

There needs to be more support for people with dementia and their families to manage the transition into care homes.

Care quality issues could be addressed by ensuring that homecare and care home staff are adequately trained in understanding the needs of people with dementia and most importantly in how to communicate.

Hospitals are a difficult environment for people with dementia, there needs to be more access to admission prevention (to prevent people going into hospital in the first place) and step down services (to help patients transition back home).

Care quality issues could be addressed by ensuring that hospital staff are adequately trained in understanding the needs of people with dementia, and most importantly in how to communicate with patients and families.

There needs to be more help to prevent people losing vital skills whilst they are in hospital.

Families need to be engaged in hospital discharge planning. Poor hospital discharge has negative consequences for both patients, and carers.

Family carers experience and knowledge about the person with dementia should be recognised and used by health professionals. People sometimes felt dismissed by staff, and that this had affected the quality of care provided to the person with dementia.

Services need to work well together to support people when they have health and care needs.

Services should draw upon the expertise, knowledge and skills that other teams/professionals offer in order to provide person-centred care and support.

Families should be invited and supported to participate in multi-disciplinary meetings. They should also be informed about how they can initiate a Multi-disciplinary meeting.

There needs to be better basic communication between services to ensure key information is made available to everyone involved in the care and support of someone with dementia.

There needs to be better co-ordinated support for people with dementia and their families at end of life.