Working alongside carers of people with dementia

Working alongside and supporting carers can mean many things: carers may need help to take up caring, to balance their caring with the rest of their life so that they can continue caring, or to give up full-time caring responsibilities. 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. This feature looks at some issues that may arise when working alongside carers, and the kinds of support that care staff can offer.

Give us [carers] more information and support, make sure that organisational problems are minimised and all the professionals are trained in dementia.

Brian Hills, a member of Uniting Carers

One of the SCIE Open Dementia e-learning programmes looks at the issue of who can help people with dementia and their families as they go through the journey of dementia. Go to section 2, 'Help and support' within Module 4, 'Diagnosis and who can help?'

Complex relationships

The relationship the carer has with the person with dementia may be complex and involve a lot of personal things that we don't know about. We need to remember always that families have had a lifetime of experience together before they have contact with the care system.

In the quote below, Michelle Poole, a member of the Uniting Carers organisation, shares the difficulty of becoming a carer for her mother after having had an uneasy relationship for so many years:

Becoming my mother's carer, something I never expected nor sought, struck right to the heart of our relationship. Never an easy one. An ironic role reversal meant I became the reluctant mother and she the rebellious child. But I'm still her daughter. Many times I would walk away fuming or desperately upset not just by her behaviour, but also by the legacy of past injustices. I felt so guilty about my anger and frustration. Questioning myself. Am I the only one feeling like this? Other carers seemed so saintly.

Michelle's experience highlights the complexity of adult children supporting a parent (or parents) who develops dementia: a potentially very stressful and painful change of roles for each person.

Speaking in private

For these and many other reasons, carers may feel they need to speak with care staff privately – without the person with dementia being present. It may be that family members have something that they feel is relevant to the care of the person with dementia, but they do not wish to cause upset or alarm by speaking in front of the person.

Ming Ho describes this painful predicament well here:

If a family carer is the principal (or only) witness to [dementia] symptoms, they may feel huge conflict at flagging up concerns or asking for outside help, in fear of betraying their loved one. They may need 'permission' from a third party. Ideally, there would be time for both the person with dementia and their carer to each have private conference with case workers, to build the whole picture.

Ming Ho writing in The Guardian, 24 May 2013

This needs to be handled carefully, but can be an enormous source of support for carers.

Valuing carers

Through your communication, verbal and non-verbal, you can show carers that you respect their knowledge and that you want to listen to their views. Working together, you will have more satisfaction and be of more comfort to the carer.

Carers can be such a valuable source of information. In particular, family or friends can fill you in on information from a person's past: this may be the critical piece of the puzzle in coming to understand a person's behaviour and their needs so much better. Graham Stokes' helpful book, 'And still the music plays', is full of stories of situations in which family carers have shared valuable information which has unlocked vital clues and helped the whole care team respond better to the person with dementia.

Get into the habit of asking the carer, 'What do you think?' or 'How does this feel?' or 'How does it look to you?' and listen to what they say. You can learn much from carers, and they can learn a lot from you too.

Supporting carers to maintain their health and interests

It is vital that carers keep themselves well. Ask them what you can do to help them do that. Keeping up some ordinary pleasures – walking the dog, going to the local pub regularly – is the most important thing, if it is at all possible.

Carers may really need a lot of support – practically and emotionally – to step back from a caring role, even for a very short time. The types of support described here in this feature (respite care, day support, peer networks for carers) are all important ways to do this.

The Alzheimer's Society (2010) has a factsheet on this topic, 'Carers: Looking after yourself'.

Carers' organisations and networks

Carers' organisations play an important role in offering a range of support for carers, including information and advice, and campaigning for better support for carers in general.

Carers' organisations may have a national focus (such as Carers UK), or be specific to a local area (such as Camden Carers Centre). Most have websites and produce a range of information resources, such as factsheets explaining financial benefits.

Some carers' organisations are specifically aimed at carers of people with dementia. The Alzheimer's Society is a national organisation with a wide range of local groups, some of which are directed specifically at carers. Uniting Carers is another example: it is a national network of family carers and former carers working to raise awareness and increase understanding of dementia.

A support group for carers of people with dementia is not necessarily more useful than a general carers' support group. Generally it depends on the individuals leading and participating in the group, how welcoming they are, and whether the content and approach fits with the individual carer's needs.

Carers can also offer or receive another particularly valuable type of one-to-one support – known as 'peer support'. Local schemes – sometimes known as 'buddy' schemes – link up carers in a similar situation, or link current carers with former carers.

There is increasing interest in the online versions of this too, for example through the Alzheimer's Society Talking Point forum, and through social media websites such as Twitter. Look up #dementiachallengers on Twitter to link up with a growing group of people, many of whom are carers of people with dementia, who use Twitter to network and support one another.

Information for carers

For some people, reading leaflets and booklets or looking things up on the internet is very helpful - they can access valuable information when and how they like, from the privacy of their own home. Make sure the carer has a copy of any local dementia guides and information about key websites for carers, such as the Alzheimer's Society or Dementia Challengers.

Every piece of information or advice on the SCIE Dementia Gateway can potentially be helpful for family and friends in caring roles. The Useful links section includes a long list of books, films and websites – and professionals may find it helpful to pass on this information to family carers. The SCIE Open Dementia e-learning programme, Module 5 'Common difficulties and how to help' could be a good place to look too.

Training for carers

Some people will take in more if the information is presented in a meeting or as part of a carers' course on dementia.

Although each person with dementia is different, there are some common problems which carers find really hard to cope with, such as the person with dementia walking about at length, sleeplessness, repetitive questions and aggression. Giving carers education and advice about the most common problems that they are likely to meet and how to deal with them can be a tremendous support. Carers shouldn't have to have the added burden of finding these things out for themselves. Our job should be to make their job as easy as possible, to preserve their health and wellbeing.

Carers may be able to access training through a range of local organisations (voluntary or NHS), through learning from other carers (peer support) or through their own self-directed learning. Make sure the needs of the person with dementia are being met too – either at the venue or back at home, and offer transport if at all possible.

Home, day and support services

The local authority will conduct a community care assessment of the needs of both the person with dementia and the carer, and from here try to work out the best way of offering care and support to the person with dementia and the carer. This could be regular home care support with domestic tasks or with personal care. What matters most to carers is that the service is flexible and reliable, and delivered by a well-trained, stable staff group who offer continuity.

A new way of supporting carers is to provide them with the funding and support them to spend the money in the way that suits them – known as self-directed care. Someone might say, 'I'd rather have someone look after mother from 4pm on Saturday until lunchtime on Sunday than a couple of centre visits. It lets me have a drink and stay over with my friend.' Self-directed care may mean the carer finds a source of support that lets them carry on supporting the person at home for longer. That is good for them and for the person with dementia. For more information on this, look at this online factsheet from Age UK, 'Self-directed support: direct payments and personal budgets' (2013).

Respite care – a break from the caring role

This can be vital for a carer – for a few hours, a day or a week, perhaps longer. It may be provided at home or elsewhere. It could be a regular, planned arrangement, or it may be more occasional.

Always try to work out what will work best for both the carer and the person with dementia. One carer may need a complete, temporary break. Another may prefer 24-hour support at home for two weeks, allowing the carer to sleep, eat and go out when they feel like it, or to turn out cupboards and do the garden – whatever matters to them.

One person with dementia may become so distressed in a residential respite placement that the stress for the carer makes it more trouble than it is worth. This can be particularly true if the person with dementia is much younger than others in the care home and so needs careful planning. Another person may become quite familiar and content with the idea of going to a care home for short regular stays. Some people find this is a helpful bridging arrangement, assisting with a later permanent move into residential care.

Admiral Nurses

Admiral Nurses are mental health nurses who specialise in dementia and work alongside family carers to support them and the person with dementia. Many areas continue to be without this service, but it is highly valued in those areas that do have it. Dementia UK oversees the work of Admiral Nurses, and also runs a telephone support line, Admiral Nurse Direct, accessible by anyone with an interest or concern about a person with dementia, staffed by Admiral Nurses. To find out if there is an Admiral Nurse in your area, go to this interactive map.

Watch this Social Care TV video, 'Rapidly declining early onset dementia: living at home with nursing support' to learn more about the Admiral Nurse's role.

When carers' actions are of concern

At times a carer's actions may cause us concern – perhaps you suspect they are taking money from the person with dementia, for example. It is important to get management support urgently if you have concerns about the safety and wellbeing of any person with dementia, and if necessary begin safeguarding proceedings.

Another difficult area is the disclosure of a diagnosis of dementia. The carer might tell you to deny that the person has dementia or what it means, if asked. Find out why they are anxious about this, and try to help them understand the benefits to the person and everyone else of looking at the problem together. It is not in the interest of the person with dementia to be kept ignorant of something that everyone else knows and is acting on. How and when to do it may take some careful consideration, and the support of a manager or colleagues could make a big difference.

You may also find that, in order to keep their loved one safe, carers use forms of restraint that concern you (say, using a belt to keep the person with dementia sitting down). It is really important to make sure the carer knows of safer alternatives. They need to be given support for the problem for which the restraint seemed a good solution. They might try to limit the person's daily life in other ways, lessening the independence they might otherwise retain, thinking this will minimise harm. The carer may have difficulty in expressing what they need or telling the right person and you can help them with this.

SCIE's e-learning programme, 'Managing risk, minimising restraint' looks at the issue of restraint in care homes and may be helpful in thinking about these issues.

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