New ideas for supporting carers are springing up all the time, and there is increasing recognition of the need to offer greater choice and flexibility to carers. Carers need access to good information, support and finance. They also need services that are reliable and well organised, with a stable group of well trained staff. And they may need a helping hand to link up with other carers in a similar situation.
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Supporting carers at diagnosis
Family and friends play a vital role in the life of a person living with dementia. The period leading up to and around a diagnosis of dementia is often a very difficult time for family and friends. Support for carers around the time of diagnosis is vital: whether this is through information leaflets, a support group or through linking up with other carers online. Becoming a carer typically involves taking on new roles, tasks and responsibilities and may involve a change in the relationship with the person with dementia.
Supporting carers in hospital and care homes
The move to a care home or hospital is often after a crisis and not a planned development. In these times of change, carers have a vital role in smoothing the transition for the new resident. A person with dementia may be distressed at this time and this will be made worse if care staff do not have enough personal knowledge of the individual. Staff have a vital role in supporting the carer and should give permission for the family carer to remain involved as much as they want to be.
Supporting carers of people with advanced dementia
Carers for people with advanced dementia need the support of skilled care staff more than ever. The physical care needs of a person with advanced dementia are increasingly complex and demanding. Specialist staff can give advice on eating and swallowing, skin care and pain management. Communication is also increasingly complex and may depend on sensitive interpretation of non-verbal cues. Care staff can learn a lot from listening to carers: they know the person with dementia best.
Early onset dementia: living at home with nursing support (video)
Meet Jim and Janet Swift, both keen travellers until Janet was diagnosed with dementia at the age of 58. Jim’s account of their experience illustrates the widespread effect of a very rapid deterioration, and explores the sense of loss and loneliness that can be part of the caring role.
Useful links Open
A guide to psychosocial interventions in early stages of dementia
The British Psychological Society worked with people living with dementia to produce this resource aimed at people newly diagnosed with dementia. The 2014 guide reviews a wide range of interventions (such as reminiscence, music therapy and assistive technology) and explains what each one involves, who it is aimed at, how to access it and what the evidence is for its efficacy.
Carers UK is the lead campaigning organisation for carers in the UK. This website has national and local information about services and support available to carers, and issues related to caring.
Carers’ Call to Action
The Carers’ Call to Action was launched in November 2013 as part of the work of the Dementia Action Alliance: it is calling for individuals and organisations to sign up in support of greater acknowledgement and involvement of carers of people living with dementia.
This website was launched in 2014 and is aimed at family carers of people living with dementia. It includes around 100 short video interviews with carers talking about how they have developed ways of coping with everyday problems. The videos are grouped into four sections: 'Understanding dementia', 'Daily life', 'My relationship', and 'Looking after myself', and presented alongside other online resources on the topic.
This directory of over 3,500 dementia support services is run by the Alzheimer’s Society and is aimed at anyone affected by dementia in England, Wales and Northern Ireland. The directory search function asks for a postcode and then lists basic information about nearby voluntary, statutory and private services.
The charity Dementia UK promotes and develops Admiral Nursing nationally. Admiral Nurses are specialist mental health nurses who focus on the needs of carers and families of people with dementia, but they are currently only available in limited parts of the UK (see Dementia UK’s website to find out where). The charity runs a national telephone and email helpline, Admiral Nursing DIRECT, staffed by Admiral Nurses and available for anyone affected by dementia, including professionals. Its website includes a long list of ‘Common questions we get asked’ with helpful answers, such as ‘We’ve been told dad has dementia – now what?’.
Talking Point is an online community for people with dementia and their carers, family and friends to discuss all aspects of the condition. It is hosted by the Alzheimer’s Society and supported by a group of volunteer moderators. It includes a forum for people under the age of 65 who have dementia, and their carers, and a forum for gay and lesbian carers.
This is me
This is a leaflet developed by the Alzheimer’s Society for people with dementia. It was originally developed for people with dementia who were going into hospital, but it has been broadened to be suitable for any person with dementia who is receiving professional care in any setting. The leaflet can be filled in by the person with dementia or a family member, and it covers things such as preferences, likes, dislikes, interests and other information to help a person cope in an unfamiliar environment. The Scottish Government and Alzheimer Scotland have launched a similar form, Getting to know me.
TIDE: Together in dementia everyday
This is a new national involvement network for family carers of people with dementia, which aims to involve carers in supporting other carers, influencing policy and improving local services. The network will offer a development programme designed by carers to pass on skills and confidence to other carers.
Triangle of Care – carers included: a guide to best practice for dementia care
The Carers Trust and The Royal College of Nursing (RCN) have produced this guide for care services on involving family carers in the care of people with dementia.