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Dementia: are carers getting the support they need?

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Older person's hands being held
Profile photo of Emma Callery Emma Callery Editor, Which? Later Life Care
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I recently visited a family friend, who was diagnosed with vascular dementia a year ago. I had heard that he was a greatly diminished person, so I was almost prepared for the man who greeted me.

But I certainly wasn’t prepared for his tired and careworn wife.

Here was a woman in her eighties who has the sole care of someone who is now only able to shuffle around on sticks, has no recollection of recent events and gets agitated when his routine alters.

Freda says that she has a truly supportive GP, has her husband’s Attendance Allowance in place and a stair lift due to arrive any day now.

All their physical needs were in place, but what of Freda’s emotional needs? She was at a loss to know where to turn for support, even though there is advice out there.

Living with dementia

Freda is but one of tens of thousands of family carers who look after the 800,000 people who live with dementia in the UK. Fortunately, she has now been able to organise a couple of hours a week where she is not solely responsible for Trevor and she feels slightly more able to cope with the sad and stressful changes in their marriage.

If you know someone in need of help, our guide to taking a break from caring explains what types of respite care are available and how to arrange and finance it.

People like Freda have prompted us to ensure we have specific advice about living with dementia on the Which? Elderly Care website. We also list useful organisations and websites to guide people to the many charities and organisations that support people with dementia and those who look after them.

Befriending services for carers

Not least among these are the Alzheimer’s Society and CarersUK, who organise befriending services for carers. Sunday 14 September is also National Dementia Carers Day organised by Dementia UK and the Alzheimer’s Society, which is a day aimed to further raise awareness of the needs of family carers of people with dementia.

Do you care for someone with dementia? Do you know someone who does? I’m keen to hear of your coping strategies and what further advice or support you feel could be provided by organisations like Which?.

Comments
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Vynor Hill says:
12 September 2014

It’s significant that no one wants to talk about this and yet there are many families distressed by dementia. This has been the case when ever you have raised this subject. Perhaps there is research to be done about our reluctance to share our views.
Previously, I have summarised my particular situation and so will not re-hash my comments. Suffice it to say that the world surrounding dementia is confusing, and not just for the sufferer. There is a great deal of work to be done to make the support system more user friendly and proactive rather than reactive. It is also a fact that money is useful in gaining quality services. That isn’t the whole story. Even the private sector is stretched. The employees are under paid and expected to do too much. This results in missed appointments and hurried appointments. Anyone caring for a person with dementia knows, only too well, that time is one of the most important elements of that care. Rush and hurry causes untold misery and compounds the confusion. If it takes a quarter of an hour to make a toilet visit so be it.
Perhaps we are so focussed on the day to day minutia that it becomes difficult to do the research to find out where the help can come from and especially help that is trustworthy and reliable. It is there, but it’s something of a lottery to find it and often not easy to access exactly what one wants. This is not an exact science and anticipating the next need isn’t easy as the dementia increases in all sorts of unexpected ways.
So, coping strategies. Sharing the load with others to provide down time -me time-, time to step back and review. This should be regular and planned. For some this is easier said than done. My sister and I both have our own homes. That’s a luxury and we are lucky to have this escape. It’s also a worry being there and maintaining them!
Which say that they identify services that are available and produce a web site of useful addresses. They might also star rate the services for reliability, helpfulness and cost for the user. Something in print would be valuable too.
Carers should have a life outside the home. Your example of the elderly, careworn wife is an example of the failure of outside agencies to give her the release she needs and, possibly the counselling to take that release in the first place.
Someone to talk to who can mentor the family and facilitate access to other agencies. Who has the time to do this I wonder?
Equipment to make life easier for cared and carer. Routine should be just that and not a hassle every time.

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Emma Callery says:
19 September 2014

Your comments are all so helpful and pertinent, Vynor. With the Elderly Care website, we are aiming to give practical information about what dementia in its various guises is, how to gain a better understanding of it and – most importantly – how it is possible to support someone with dementia and a family carer, whether this is the visitor to the site or someone else. We are unable, however, to give a star rating for the services because of our independent stance.

It is clearly important that everyone involved with cases of dementia need as much advice and support as possible to help ease their way through the day-to-day living with this disease. Thank you for sharing your thoughts and experience. Many of the speakers at the Alzheimer’s Society annual conference last week spoke of a continuing raised awareness and openness of speaking about dementia. Let’s hope that this brings with it even greater support from all health professionals and an easing of the burden for the sufferers and their family carers.

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julieshrive says:
29 November 2014

What bothers me as Mother was in one for approx 10 years that unless diagnosed cannot get support funding so other conditions get neglected as there is one GP for whole home.Suspect my Mother who couldn’t speak ,swallow & see properly had complications of polymyalgia rheumatica.
That LA where the home was is responsible for funding that if you live on a boundary the buck gets passed.She had come from another home when needed hoisting & nursing.We had asked for her to be in intermediate section although worse.This had probably hastened Father’s demise as full time carer .He had Cancer & heart problems.
I had an Independent reviews ,where lawyers in another legal call centre couldn’t support over a Nurse on a remit not recording correctly & Review not allowing me to speak telling lies the Chairman [ woman] saying would allow later when interupted.They did not do when respected what said consequently other legal call centres not handling case fairly & she has since died
.I feel problem could be genetic & the powers that be trying to make a mental issue when not getting essential monitoring for other related conditions.This could result in my demise 10 years too soon.

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