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Dementia patients need more support at diagnosis

Survey of 1,000 patients reveals they want more information at an early stage

Mark Gould

Monday, 23 January 2017

A survey of the experiences of patients with dementia and their families reveals that there is a serious shortage of information available regarding services and support following diagnosis.

Patient watchdog group Healthwatch UK spoke to more than 1,000 patients and their families and visited 120 care home to find out more about the experiences of dementia care, from the help provided by GPs, to the support offered through hospitals and social care.

Healthwatch says cases of dementia are on the rise. Around 700,000 people in England have the disease currently, and this figure is expected to increase to over a million by 2025.

Local Healthwatch branches have also visited more than 120 care homes. They have spoken to patients themselves, as well as those providing support, such as care home staff and family carers, to find out what is working well, and what could be improved.

The survey found that whilst in most cases people found care to be compassionate and considerate, there were also things that could be better. Although the exact findings varied from area to area, local Healthwatch found that those they spoke to wanted to see improvements in three main areas:

  • The availability and type of information regarding services and support following diagnosis helps to set the tone for the experiences of those with dementia and their carers. Support for carers is not always as clearly signposted or explained as it could be. Dementia awareness and education is improving amongst both professionals and the public, however, some GPs are unable to spot when patients have dementia.
  • Specialist services for people with dementia, like memory cafes, are said to be very good, but are not always accessible to those who would most benefit from using them. More generally, many people felt that the quality of services themselves was inconsistent, sometimes within the same locality.
  • More work needs to be done to make public spaces dementia-friendly by improving elements such as lighting and signage.

“When people go for a diagnosis, I think that information needs to be there for them. Because they go away and they've been told 'You've got dementia'. But they have got nothing, they have got no-one to call, nowhere to go," one carer told Healthwatch Norfolk.

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