INNOVATION: CARERS’CALL TO ACTION
Excellence in caring for the carer
Norwich April 2014
Thank you for giving me an opportunity to tell you about the latest development from the Dementia Action Alliance.
I cared for Malcolm, my husband who was diagnosed with Alzheimer’s at the age of 51 and here he is 16 years later, the day before he died, as helpless as a baby. Those 2 photos show not only the length of time Alzheimer’s can run, but also the physical as well as the mental ravages it inflicts and you can imagine the impact of his long drawn out deterioration on me and our family.
Since the launch of the dementia strategy in 2007, a great deal has been achieved to ensure that a person can live well with their dementia, and you, the workforce right across the social care sector are working hard to achieve excellence in dementia support and care, for which families are very grateful. By the word carer I mean the unpaid family carer or friend who is daily supporting a person who has dementia – as opposed to paid careworkers or care staff – I do wish the media would get their terminology right! In the new initiatives for pwd, wonderful though they are, the carer’s vital role in the picture has been somewhatneglected.
Two thirds of people with dementia (550,000) are cared for at home, with the family carer giving care for free –we save the state some £7 billion each year. They form the largest dementia workforce and the time has come to recognize what they do and give them better support. Research by Ablitt and others has concluded that “When carers are well-supported, they can provide better care for the person they care for and report better well-being outcomes for themselves” 2 quality outcomes – or As a supermarket might label it, Commissioners – it’s a bargain - 2 for the price of 1!
Hence the Carers’ Call to Action, supporting the needs and rights of fc of pwd of which I’m a part.
The carers call to Action has a shared vision, and identifies 5 Aims.: the first is:
1. Recognising that carers of people with dementia have a unique caring experience.
Caring for someone with dementia is different from caring for the frail elderly who retain their cognition. Research tells us that carers of people with dementia suffer greater strain and distress than carers of other older people. The person we care for, because of diminishing cognition, becomes unable to convey their wants or needs and so we have to represent and advocate for them. We mourn a succession of losses over many years and the intensity of 24/7 vigilance can be exhausting, even undermining the carer’s own health. This uniqueness comes from the nature of the disease itself. Yes, we all know it’s about forgetfulness BUT Recent research shows that it isn’t your usual forgetfulness. You or I can’t remember something because we’re having difficulty in retrieving the memory. But in dementia, there comes a point quite early on when the brain ceases to lay down new memories – so there isn’t anything there to retrieve. No point in asking someone ‘did you have any visitors at the weekend? – nor trying to jog their memory - it’s a blank! Imagine how that feels! In addition, memories and learning they acquired before they had dementia unravel in the reverse order they were laid down and to cap it all, they cannot imagine the future. This is not your usual kind of caring; living and talking about the right now or the more distant past. Butif they can’t enter our world, we must enter theirs and enjoy it with them
2. Aim Carers of people with dementia are recognized by professionals as essential partners in care.
For a start, the carer knows the person best. Because the pwd has no memory of recent events, and may give professionals out-of-date information, it is essential that the carer is involved in all assessments, careplanning and major decisions, in any care setting, for we are often excluded or marginalized. We may have handed over the hands on care to the staff in a carehome but we still care about our loved one and many want to be involved in the caring. I had become totally exhausted so I put M into a carehome for a time in the middle of the journey. The staff were so kind to me – I felt more bereaved at this point than when he eventually died – my hands felt so empty, so they asked me to come at times which included a meal so that I could continue to feed him.Over time, a triangle of trust was formed between the professionals, Malcolm and me – allowing information to flow freely between us. Recommend Triangle of Care.
%I now give talks to staff from groups of carehomes about what makes for excellent dementia care from diagnosis to end of life, and when possible I ask if relatives can be there as well; the reason being that staff and relatives need to be singing from the same hymn sheet. E.g. It enables staff to talk about end of life care with the family with a mutual understanding that in the dying phase removal to hospital is the last thing a person with dementia requires – an admission to a noisy, unfamiliar environment will hasten death – and it is kinder to allow people to die in familiar surroundings and with familiar hands and voices. Carers and professionals working together for the best outcome for the pwd.
3. Carers of people with dementia have access to expertise in dementia care for personalized information, advice and support.
This is a most important aim, because carers want to do their best but often end up, unwittingly, giving well-intentioned but the wrong kind of care I made so many mistakes. You know the sort of thing I mean –forever correcting –‘ I think it’s Tuesday today’ – ‘no it isn’t, it’s Wednesday’ – when I should have just let it go – does it matter. Being bossy, taking over. – C’mon M hurry up, get your shoes on – here let me do that for you – treating him like a child and undermining his confidence instead of allowing him to do things at his own pace and in his own way. Through my ignorance, the wrong kind of care must have dented our relationship. I remember the time that M insisted on going to bed with his trousers on – resulting in a bedroom scene – not of the late-night TV kind – with me coaxing, then getting exasperated and even physically trying to take his trousers down – something M might have enjoyed in the early days of our marriage, but not now! Then, blessedly, the AS support worker came from the next county, smiled and said, But B, there is no law against wearing your trousers in bed. Who’s it a problem for – you or Malcolm? If it’s you – just Go With the Flow, However bizarre it seems. The right kind of care. Suddenly, caring got a lot easier and that motto was engraved on my heart. The result of expert advice. And she suggested a nightshirt instead of pyjamas. Practical advice! Dignity prederved! Brilliant. This is what is meant by personalized advice and support. It has to be a person. Because it is much more than information. Neither a leaflet, computer nor a phone can give the carer a hug when you’re really down.
I challenge the current position commissioners find themselves in – only give help when there’s a crisis. If from the beginning, the carer has a drip, drip kind of access to consistent expertise in dementia care they will be doing a better job, have more satisfaction with their role, continue to care for longer and prevent or delay those much more expensive crises and hospital admissions. The person they are caring for benefits enormously from enlightened care and support which also preserves relationships.
You might be asking – how can we help – we are based in a carehome. I foresee that in the near future carehomes with excellent dementia expertise could become a dementia hub for the whole community – a new business initiative - inviting carers to your training sessions for new staff – e.g. for moving and handling, or dealing with perplexing behaviours. Being a source of accessible dementia care expertise
Many carers feel very alone. So perhaps making a room available once a month where carers can meet together for peer support – to share laughs or cry over losses and swap useful tips, while the person they care for, if they have to be brought along, are allowed to join in with current activities for your residents. In return you might findcarers have skills useful to carehome life - I could offer playing the piano for sing-alongs for example – so that the initiative becomes a two-way benefit. For too long in my opinion many carehomes have felt like monasteries – doing good stuff behind closed doors–but the doors are beginning to open to the wider community, who are losing their usual fear: not saying to their families don’t you dare put me in a carehome, but Dy’e know, I wouldn’t mind ending my days in such and such a carehome – we have great times there.
Aim 4. Carers of people with dementia have assessments and support to identify their ongoing and changing needs to maintain their own health and well being when caring at home.
Carers used to have to ask for an assessment from Social Services, but you can’t ask for something you don’t know exists. The new scenario is that GP s will offer an assessment to any new carer and should keep track of them and reassess when needed. This is a good move. But it is worthwhile for Dom careworkers and other Social care staff working in the community telling family carers that they are entitled to an assessment of their own needs. The govt has given GPs funding to support long term carers to have a break – but I don’t see this plastered on my surgery’s walls. In the pipeline are periodical health checks, because carers are known to be good at ignoring their own health. This ties in with no 5.
Carers have confidence that they are able to access good quality care, support and respite services for both themselves and the person they care for. Flexible, culturally appropriate, timely and provided by skilled staff. Just 2 points here:
I’m now confident that standards are rising in the majority of Dom care Agencies, with better training and acknowledgement that continuity of staff is an important factor for pwd. Poor paid care causes extra distress to the carer. Miniscule calls are just not on for pwd – or anyone else for that matter!
As for respite care for us – breaks to allow me to go and visit my grandchildren, I’d arrive there but several times I was rung up to say please come back and take M home. We can’t cope with a younger and very active person with dementia. This is still problematic – services designed for younger people are scarce. Maybe they didn’t understand the reasons behind perplexing behaviour, nor appreciated that he would have no memory of being in this ‘strange place’ before and wanted to go home. Would you send your 5-year-old to strangers? He nearly always came back in a worse condition than when he left. Carers won’t take much-needed breaks unless the replacement care is good and personalized. Later on, M flatly refused to go anywhere outside home – the answer was hiring in replacement live- in care at home – the same person each time, funded by direct payments. And being in his familiar environment , with a familiar careworker, M was much more content – and so was I. For, you can’t neatly separate out the carer and the person with dementia – what happens to one affects the quality of life of the other – we are inextricably intertwined.
I also learned that the care staff whether at home or in a carehome who gave the best quality of care to Malcolm were those who brought their hands, head and heart to the job. But you know all about that! And that’s why I ask you to please sign up to being Dementia Carer Aware in whatever organization you are part of. There are leaflets to hand on the stall. –By becoming more carer aware you can help to make even those in authority more carer aware. Spread the message. I’m sure in the future you personally, will find innovative ways, however small, of supporting family carers in your particular community. Thank you for listening to me.
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