Bristol post diagnostic support services

ContactEmma Moody, Programme Manager for Older People, Bristol CCG
Telephone0117 984 1512
AddressSouth Plaza, Marlborough Street, Bristol, BS1 3NX

This project will support people with dementia and their carers/family by providing new courses that people can use once they have had a diagnosis of dementia. All these courses will be in the community near to where people live in Bristol.

The main objectives of these post-diagnostic dementia support services is to enable people with dementia and families to continue living in the community with a good quality of life, to provide information, to support people to deal with issues arising from a diagnosis and to delay admission to long term care or the need for crisis management. This support brings benefits to both people with dementia and their carers and family, as well as minimizing the cost to the healthcare system (Keady et al. 2007).

Bristol Clinical Commissioning Group (CCG) and partners have sought to adopt the principle that the key value to underpinning the health and well-being of people living with dementia and their carers/family is a person-centered approach to care (Commissioning Framework for Dementia, 2011). This innovative approach seeks to value and protect the rights of people, whilst recognising and respecting what makes each person unique; and to provide adequate support to enable the people with dementia to remain in stable familial relationships.

There is a need for new approaches to delivering post-diagnostic support to people with dementia and their carers/family to ensure there is appropriate equity, access, capability and capacity available (Living well with dementia, A National Dementia Strategy, 2009). According to Alzheimer Society, such support consists of provision of information, meeting of emotional needs and provision of appropriate social support (Support. Stay. Save. Care and support of people with dementia in their own homes, 2011).

The focus of ongoing work in Bristol has been to improve diagnosis rates and manage more people within primary care. This project looks at the next phase, which is what is required to provide care and support post diagnosis, enabling people to live well with dementia.

Course 1: A new support course in the community
These courses provide hands on practical advice, once someone has had a diagnosis. It will include information about local services, where to go to for help and will start to build up peoples understanding of what dementia is, what to expect as the disease progresses and how to manage and cope. The courses will be run by Avon and Wiltshire Mental Health Partnership NHS Trust. All people with dementia and their carers will be able to attend a course in a group setting to support them after they have received a diagnosis of dementia, regardless of where the diagnosis of dementia has been made.

Course 2: Providing courses in Cognitive Stimulation Therapy
This is a course that can help people with dementia keep their memory working as well as possible. Cognitive Stimulation Therapy is a fun programme of activity sessions, designed to improve wellbeing and confidence. People will be able to attend these courses when they have had a diagnosis of dementia. This can be an alternative to medication (if someone is not suitable for medication), or it could be an additional treatment for dementia. The courses are suitable for anyone with mild-moderate dementia.

Course 3: Providing courses for carers/family members after a person has received a diagnosis of dementia
This course will help support families, give them information about where to go for advice and provide practical ways to cope with the changing situation. They will also signpost people to the different services in Bristol, including where to go for short breaks. This course will also help people understand what being a carer means and where they can go to, to access a break or get advice.

Bristol Clinical Commissioning Group has been working hard with people in other organisations, including Alzheimer’s Society, to make sure that the courses are what people with dementia and their carer/families want and what they feel will be useful to them. We want to ensure that the courses are run close to people’s homes, take account of the different backgrounds that people come from and are easy for people to access.

According to Alzheimer Society, the best type of support is based on good information, meets someone’s emotional needs and also gives them social support. In Bristol we have spent a lot of time looking at where and how people get their diagnosis of dementia. This bid now starts to look at what services we can put in place to give people the most choice and support after they have their diagnosis. We want to make sure that what we provide in Bristol means that people can live well with dementia.

Anticipated outcomes

  • There will always be at least 1 of each course (post-diagnosis course, cognitive stimulation therapy course and course for carers) available within the area (locality) where the person with dementia and carer/family live.
  • The courses will support people directly after they have had their diagnosis and support their carers and family.
  • There will be a course available in each area, which has proven results to help people’s memory once they have had a diagnosis, regardless of whether they are able to take dementia medication or not.
  • Every person with dementia in Bristol will be able to access a course and the course trainers will be able to meet any of their cultural requirements that relate to dementia.
  • More carers will be recognised, their information will be added to the carers register and an increasing number of carers will access a carers break.
  • People with dementia and their carers will start to develop new friendships and network groups that will provide informal support on an ongoing basis when the courses have finished.
  • When people have finished the courses they will have a greater understanding of what dementia is, tips to help them manage it, knowledge of where to go for help and a greater confidence in being able to live well with dementia.

Qualitative outcome metrics

  • Measures of experience of the service from person with dementia and their carer/family (e.g. quotes, comments, evaluation questionnaire)
  • Measures of satisfaction of the service from people with dementia, carers/family, referrers and providers of the service
  • Improved quality of life and sense of well-being (observations, reports by self and others, impact stories)
  • Improved access to local knowledge about other community services and opportunities

Specifically for Service 2: Cognitive Stimulation Therapy

  • Quality of life measures for each group attendee pre and post the 14 week course
  • Impact stories and case studies (minimum of two per quarter) to demonstrate impact from both the person with dementia’s perspective and their carer if appropriate
  • MMSE scores for each group attendee pre and post the 14 week course

Quantitative outcome metrics

  • Numbers and locations of services set up across the localities
  • Number of service users
  • Service user details e.g. age, gender, ethnicity etc.
  • Numbers/source of new referrals received
  • Numbers of people who exit the service and the reasons for this
  • Numbers of people successful signposted on to other opportunities and services
  • Number of people attending the required number of sessions