Statistics, statistics and more statistics. They can be scary and do not make for good bed time reading. What we know today is that over 530,000 people in the UK are living with a diagnosis of dementia and the numbers will keep growing with an estimation that 1.7 million people will be living with a diagnosis of dementia by 2050. Whilst statistics are important to collect and to know about, on their own they may not tell us very much and they can feed anxiety and negativity which is not a good direction to be going in if as a society want to build knowledge and confidence about how to live our lives in the workplace and in our families and communities in the face of this condition which is fast becoming part of everyday life for thousands of families. The last thirty years has been a time of great progress for improving attitudes and skills in dementia care with a growing number of resources (although not enough) becoming available to support family carers of people living with dementia so that life can go on. And it does with more families being able to access specialized support from a growing number of specialist services such as Memory Assessment Clinics and Admiral Nurses and dedicated charities such as Alzheimers Society and Age Uk.
The National Institute for Health and Care Excellence (NICE) in its recent draft consultation recommends that interventions for informal carers “are likely to be most effective when provided in group sessions” and that the following components should be included in support interventions
- information about dementia, its symptoms and how it is likely to progress
- developing personalised strategies and building carer skills
- training in how to provide care, including how to understand and respond to changes in behaviour
- training in adapting communication styles to improve interactions with the person living with dementia
- how to look after their own physical and mental health and emotional wellbeing
- planning enjoyable and meaningful activities to do with the person they
- information about relevant services (including support services and psychological therapies for carers) and how to access them
- advice on planning for the future
The Royal Surgical Aid Society, soon to be re- named “Dementia Carers Count” is among the first of a small number of charities in the UK to turn attention specifically on supporting family carers. In partnership with Worcester University’s Association of Dementia studies, we are piloting 30 immersive 3 day courses for groups of family carers.
We will use the learning form these pilots to create services that family carers say they want and that are underpinned by evidence based research for our new National Dementia Carers Centre which is due to open in the Midlands in 2019. There are 670,000 people in the UK acting as primary, unpaid carers for a person who has dementia which saves £11 billion each year. The cost to family carers can be huge with 21% of them giving up work or reducing hours in order to care. We think they’re worth it!