The implementation of the National Dementia Strategy for England must begin with assigning a high priority to improving the quality and types of information available for people with dementia and their carers.
The Government and the NHS have committed to make significant and lasting changes to dementia care within five years, a move that the Alzheimer’s Society in its National Dementia Strategy for England describes as “a huge task that will require commitment from a range of organisations and people, including the NHS and local authorities, providers, charities, health and social care professionals and the Government.”
The society stresses that: “It is vital that delivery of the Dementia Strategy is made a high priority. “
Dementia is a term that broadly describes symptoms that include loss of memory, mood changes, and problems with communication and reasoning.
While there is a wide variety of dementia, the most common are Alzheimer's disease and vascular dementia. Dementia is progressive, which means the symptoms will gradually get worse.
The society believes the Strategy will make an incredible difference to the lives of people with dementia and their carers if it is implemented. It offers a huge opportunity to put people with dementia in control of their lives by making sure they have access to an early diagnosis, good quality information and a range of support services throughout their journey with dementia.
It should also translate into better public and professional understanding of dementia and better quality of care in hospitals, care homes and people's own homes.
What is it all about?
The National Dementia Strategy is a plan developed by a partnership of the Department of Health and the Alzheimer's Society that explains what needs to happen to radically transform the quality of life for people with dementia and their carers.
One of the key strategy objectives is “Good-quality information for those with diagnosed dementia and their carers. Providing people with dementia and their carers with good-quality information on the illness and on the services available both at diagnosis and throughout the course of their care.”
As part of the rollout of this strategy, the Alzheimer’s Society was asked to make recommendations about what actions should be taken to implement the objectives of the plan at a national level, improve provision of information regarding local services and support for people with dementia.
The society then published a report that presents findings from that research. It makes recommendations for action at a national level, but it is hoped that the evidence will be helpful in work done at a local level to meet the information needs of people with dementia and carers.
There are 17 recommendations put forward in the Dementia Strategy that the Government wants the NHS, local authorities and others to put into practice to improve dementia care services.
These recommendations focus on raising awareness and understanding, early diagnosis and support of conditions and helping those with dementia to live well.
To discover possible barriers to its action plan, the Alzheimer's Society surveyed 1,500 people with dementia and carers, who were members of the Society. They found that despite the range of information that is available, people with dementia and carers are still finding it difficult to get the information that they need.
There are a number of reasons for this. The report says: “There is some low level work going on, for example the Worried About Your Memory campaign, which places information in GP surgeries and pharmacies.
“However, nearly half of the questionnaire respondents reported that not knowing what information to look for was a barrier to getting the information they needed.”
A large number (33%) said they were not informed about important facts until it was too late, or the information they needed took too long to arrive.
Bridging and coordinating
“A major finding of the research was that information targeted at people with dementia represents a major gap in current provision of information.
“Much available information is targeted at carers and is in a format inaccessible to people with dementia. In particular, there is a lack of information that addresses people with dementia’s emotional needs,” the report says.
“For example, people may value information on coming to terms with a diagnosis or coping with changing, personal relationships.”
The society also noted that there was little information to address the needs of different cultural groups and access to “comprehensive information” about local services is sketchy at best.
Units within the healthcare system that fail to proactively provide people with information are also listed by the report as a significant barrier. A range of services is provided to people with dementia, each of which is responsible for providing different pieces of information. This makes it difficult for people to determine which sector to approach for a particular piece of information.
“Carers interviewed by the DIPEx group reported that they were confused about the divisions between statutory authorities and the roles and responsibilities of staff and did not know where to turn for advice,” the report states.
Holes in the net
The responsibility for providing dementia support is spread over a broad range of professionals, who must supply an equally broad range of information. This increases the risk of responsibility for providing particular information falling between the gaps.
The development of the dementia adviser service aims to change this by reducing the risk of gaps in information provision through improved coordination and planning between services, ensuring people with dementia get the information they need.
According to the society’s report: “This is in response to a problem was identified by the Picker Institute’s study of how people, with conditions other than dementia, found out about locally available services and how to access them.”
Their findings showed health professionals did not systematically provide patients with information and that there is a “postcode lottery” in terms of whether or not there is a co-ordinated approach locally to information deployment and pathway signposting.
The Alzheimer’s Society says: “Nearly one in three carers and people with dementia reported in our questionnaire that health and/or social care professionals were not able to provide the information needed, or tell them where to get it.
The society stresses the importance of appropriate training for staff, “so that they are able to effectively signpost people to sources of information”.
Also important to the treatment of dementia is the understanding of when
people are ready to receive particular information. “Receiving a diagnosis of dementia is often a traumatic event and individuals may take time to come to terms with the diagnosis. Professionals must be able to assess when people are emotionally ready to accept certain pieces of information.
“They should also understand how much information to provide. If people receive too much information in one go, they may be deterred from reading it. Also, if information is irrelevant to an individual’s situation at the time it is received, it may be disregarded and not returned to,” the society says.
Individuals’ personal preference regarding how much information they receive, and in which format, also differs.
The society’s research shows that people value and require a wide range of information. Meeting other people with first-hand experience and support for carers as well as people with dementia is ranked by people as being far more important than information from professionals and advice on dealing with behaviour problems.
The study also suggested carers appeared to be more interested in long-term planning for legal, financial and care matters for people with Alzheimer’s disease.
Putting words into action
The Alzheimer’s Society has formulated a practical approach making its report findings into a concrete plan of action.
It says that the priorities for the NHS in the short-term should be to ensure that The Department of Health booklet ‘Who cares’ should be updated and re-printed. It cites this booklet as a core source of information that “can signpost people to sources of further information” and can include the involvement of carers and people with dementia in the update process.
It also suggests that A booklet should be developed that addresses the information needs of people with dementia. “As well as information on the condition and potential sources of support, this booklet should cover how to handle fears and anxieties about being diagnosed with dementia, coping with the stigma still connected with dementia, how to tell other people that you have a diagnosis of dementia and how to cope with worries about losing control,” it says.
It goes on to say that longer-term work should focus on a better understanding of the information needs of particular groups of people with dementia, citing the “travelling community and people from black and minority ethnic groups” as areas of focus.
“Work is needed on a consideration of the training needs of staff regarding how to assess people’s information needs and provide information in an effective and sensitive way,” it concludes.
Making a difference to the lives of people with dementia and their carers will no doubt encompass a greater scope than the findings of the Alzheimer’s Society’s report alone, but it is clear that good-quality information and appropriate access to this information is core to the process of putting people with dementia in control of their lives.