Support for people with dementia. Where is it?

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The dementia challenge

Bear with me. Here are some key statements from government policy in 2009 and 2012.

In 2009 the labour government launched their National Dementia Strategy. This included:

“Objective 2: Good-quality early diagnosis and intervention for all. All people with dementia to have access to a pathway of care that delivers: a rapid and competent specialist assessment; an accurate diagnosis sensitively communicated to the person with dementia and their carers; and treatment, care and support provided as needed following diagnosis…”

“Objective 4: Enabling easy access to care, support and advice following diagnosis.
A dementia adviser to facilitate easy access to appropriate care, support and advice for those diagnosed with dementia and their carers.”

“One of the most clear and consistent messages emerging from discussions with people with dementia and their carers has been the desire for there to be someone who they can approach for help and advice at any stage of the illness – ‘someone to be with us on the journey’. Current health and social care services normally discharge individuals once the case is stable and the care package is being delivered. This is almost always perceived negatively by people with dementia and their carers, who, faced with a serious illness where there is inevitable long-term decline and increase in dependency, want to feel that there is continuing support available to them when they need it.”

“Objective 5: Development of structured peer support and learning networks.
The establishment and maintenance of such networks will provide direct local peer support for people with dementia and their carers. It will also enable people with dementia and their carers to take an active role in the development and prioritisation of local services.”

“Our vision is for the positive transformation of dementia services. It would be a system where all people with dementia have access to the care and support they need. ”
In 2012 David Cameron issued a national dementia challenge. His ambition statement included…

“People with dementia, their families and carers have told us what is important to them and what will help them to live well with dementia. They say they want to receive an early diagnosis and timely, good-quality information that will help them make informed choices about their care. They want the treatment and support they receive to be the best for their dementia and life, regardless of whether they are cared for at home, in hospital or in a care home.”


So here we are in 2015.

Diagnosis rates are certainly higher in the UK than five years ago, but very unlikely to reach the 66% target set out by Cameron. In my area we are at around 55% I am told.

The memory services that were developed as part of the 2009 strategy have been established almost everywhere. They provide relatively, quick diagnosis (or not) following primary care referral. In my case they provided a fair amount of information soon afterwards, mostly produced by the good old Alzheimers Society.

So that is real progress.

It’s the next bit that is still missing.
“They want the treatment and support they receive to be the best for their dementia and life, regardless of whether they are cared for at home, in hospital or in a care home.”

The 2009 strategy came up with a great idea.

“17. The role of a dementia adviser would not be that of intensive case management, as carried out by members of community mental health teams or outreach workers who go into people’s homes, or Admiral Nurses. Rather they would provide a single identifiable point of contact with knowledge of and direct access to the whole range of local services available. Their actions would therefore be to identify what the problems might be, and then to signpost and facilitate engagement with the specialist services that can best provide the person with dementia and their carers with the help, care and support they need simply and quickly. This remit would allow dementia advisers to work with the high numbers of people diagnosed with dementia in each area. They could work with both social care and health care services and be jointly commissioned by local authorities and PCTs.”

I wrote last week about my own feelings of anger and depression about my life with dementia. I received several supporting messages, including one from a person with dementia which read:

“I’ve not found one who does not feel the same way yet, George. It seems par for the course, sadly.”

Here in Shropshire we haven’t got Admiral nurses. Never been commissioned. Nor do we have an alternative equivalent. And we are not alone; relatively few areas have the admirable Admiral nurses. They could provide real expertise through their knowledge of the disease and the effects of living with it, for the person and the carer.

Nor have we got the “dementia advisers” envisioned in the 2009 strategy. They do exist in a few places, including the excellent Gnosall primary care project.

So what do I and others do?

When we feel miserable, desperate, need support, a listener, a helping hand…?

What do our carers do when they are anxious or angry or desperate?

What will my GP say to me tomorrow abut how I feel?

Increase anti-depressants? Well it may help, but not in the way that I want.

Refer me to a counsellor? Availability? Long, long wait. I want it now.

Refer me to a voluntary sector organisation? Doesn’t exist here because not commissioned.

Or a peer support group? Monthly dementia cafe ten miles away.

I’ll tell what should happen.

I ring the dementia adviser I am assigned to, and who I have been talking to and meeting since diagnosis. And we will talk on the phone,perhaps meet somewhere for a coffee and a chat.

And perhaps I would then be told about a group that meets every week, where people feeling the same can talk, or just listen, sit. And perhaps there’s a charity run group that has outreach people who visit when needed, or who can accompany me somewhere for a bit of fun, when I can’t see the way through.

All this needs to be bought by those who are employed to commission support and care for people with dementia and carers.

This is not rocket science. Just do it.

The 2009 strategy is sitting on a shelf on the internet. It will not gather dust, but the pixels are going blank. It’s not happening.

How are we going to influence, persuade, force CCGs (remember we employ them) to provide what everyone knows should exist?

We need to be in their faces.
At their meetings.
Telling our stories.

What they don’t see they can ignore.

They can provide wonderful reasons why it cannot be done overnight.
6 years x 365 = 2190 overnights.

They need evidence that it works and is cost effective.
Listen to us. Read what our stories. We’ve been saying it for years.
What’s the cost of attempted suicide, psychosis, acute depression?
What’s the cost of carers who can no longer cope?

And yes, you will have to decommission something to provide the dosh.
So find services which are less effective.
Don’t be frightened of taking action.
Because without courage and action nothing will change.

Spend OUR money on growing really efficient (bangs per buck) voluntary sector services.
For us.

Let’s get the 2009 vision done.

Make living with dementia better.

We can do it. Together.

If we have the will, courage and determination.

And the shared vision of a better world for people with a disease.

If it were Cancer…


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