I hate to say it but…Prime Minister, we need your help

So what have I learned in the last three days?


I’ve been to Llandudno and London.

To a Welsh “dementia meet up” and to the NHS Citizen event.

I’ve met and hugged lots of my new extended family in Wales.

What lovely people my fellow activists and dementia experts are. And how comforting it is to be reassured that my thoughts and convictions are theirs too. That I haven’t lost my bearings, or my sense of reality.

Now and then I, perhaps you too, lose confidence in what I am saying, what I think is the truth but others question. Then it’s time to meet the family and get grounded again.

I’ve learned about some wonderful work going on in Wales and elsewhere. Arts in dementia…dementia in arts activities…Dementia adventure…TIDE for carers…”lifechangestrust” and sensory changes…

I’ve understood better the difference between clinical models of care and social models, and that they need to be integrated in delivery.


I’ve learned that clinicians’ claims to provide care for people with dementia are just that….clinical. They ignore or don’t understand the social stuff that makes life worthwhile, or they think it doesn’t matter.

I’ve learned that CCG spending in Shropshire on services and support for people with dementia has dropped by 33% in three years while the number of people living with a diagnosis has risen by 40%. Parity with physical health care is just a word which sounds good but has no meaning.

I’ve learned that without social activity and community engagement people with dementia see their health and wellbeing disintegrate into loneliness, despair and ill health.

And that this could so easily be prevented if we just looked forward instead of back over our shoulders.

I’ve learned that if you ask citizens without knowledge what the future should look like they can only imagine what they know. “You don’t know what you don’t know…”

I’ve learned that NHSE appears to be relying on citizen activists to bring about the revolution in dementia care we and they want.

I’ve learned that NHSE will soon produce a blueprint for the future of dementia care  in 2020. But I don’t know how they will lever it into reality. I hope they do.

I’ve learned that most people just say there’s no money for changing dementia care.

And that’s rot. It’s about choices. It’s about spending money differently to produce better outcomes, and better return on investment.

And I’ve learned that it will take a lot of courage and resolve to achieve the change we need.

It is unbelievable that 90% of people affected by dementia receive no support to live well and to maintain their wellbeing. Some ask for help, many don’t. Some ask and don’t get it. Many have no idea what might be available. Many have the wrong post code. And their lives disintegrate. When they don’t need to.

And we accept it!

Prime minister…you need to step in and make sure your vision and challenge are made real by 2020.


Foucault and Dementia

Thoughtful, insightful piece on dementia and society. Do read this.

Belledelettres's Blog

Why did you choose Foucault as a lens?

I chose Foucault as a lens because he addresses the psycho-social and political aspects of illness and medicine. As each generation manages to deal with different threats of illness, both medical advances and political attitudes focus on the next threat to the population. Currently the world is trying to make sense of the threat both socially and economically that dementia presents. Until recently people with dementia were separated and corralled in care homes, cut off from family and society, left to die. In the same way in the past, lepers, the indigent and the insane met similar fates. The rise of the medical model of treatment is not much use for people with dementia as there are limited treatments and no cure. So it is important that people with dementia are accepted by and encouraged to take part in society as best…

View original post 419 more words

An odd balls up…

So, I meet my outreach mental health Dementia nurse.

Six monthly meeting.

She checks how I feel. Driving? Functions? Conversation? Orientation?

Memory test: 26/30 (one down this time… wrong day of week)

So all looking ok. No particular decline, though I do get days of the week wrong on occasions.

I become convinced it is a Tuesday, for example, when it’s a Wednesday.

I think it’s Tuesday. But my diary tells me what I’m doing on the right day, and I don’t miss appointments. So it’s not a huge issue.

Then we get to the bit I don’t enjoy, though I started quite relaxed.

How will you know if you are doing too much?

Do you think you are doing too much?

How will you know when you can’t quite keep up with things and ought to consider not attending meetings or committees?

Have you got things right?

In other words…

Be careful.

Don’t do so much.

Don’t tire yourself.


You may not be able to take part in conversations and discussions but you won’t realise it.

And perhaps that is happening now?


At the time I just said stuff about choosing what I do more carefully now.

About talking to people about whether I am on the right wavelength, in the right room, etc.

But later I really started to question my capabilities?

A real crisis of confidence.

I am due to attend a local health economy dementia steering group that afternoon, and as I drive there I wonder whether I have indeed got things out of proportion…

About the lack of support for people post diagnosis.

About what people affected by dementia actually want and value.

The patient view against the clinician view.

Social model of care versus medical model.

So I start the meeting, where I will rehearse my NHS Citizen presentation, really confused.

Complete implosion of confidence.

Am I just simply wrong? Deluded? Got it all out of proportion?

After all, clinicians tell me there are around 45 staff in Shropshire providing dementia services, peer groups, cognitive stimulation therapy courses, crisis support.

What more could we want? It’s a good service.

By the end of the meeting I am back.

Most members of the group agree with me.

Shameful lack of support post diagnosis.

A neighbouring commissioner agrees with my arguments, and confirms my intuition and knowledge.

Back on track.

And a bit annoyed at what happened.

As Kate Swaffer says, “prescribed disengagement” is bad.

Live well, do what pleases you, keep as active as you can.

Ok, make the odd balls up, but wasn’t it ever thus?

That, dear reader, is life.


A bit of a trickle…

I’ve been asked quite often recently how I am.

By people who know about my dementia and wonder how it is going, or developing or progressing.

That’s nice. Much better than ignoring it. Pretending it doesn’t exist.

How are you getting on… you know, are you ok still?

How should I respond?

I think.

The automatic reply is of course “fine. I’m good, thanks.”


Yeah, I’m doing ok.

But they don’t know it’s my auto response.

I can’t think quickly enough to come up with the real answer so I read the autocue.

I’m fine thanks.

Ask me a fact and the chances are I’ll get it.

What are you doing tomorrow? Which workshop are you going to? Busy this weekend?

Easy, though I’ll usually check my apple diary.

Ask me what I think though and I don’t know where to look.

How am I? How indeed am I?

Well, what shall I refer to? How I feel today? Now?

Dementia? Fatigue? Cheerful? Pissed off?

Do they want to know that?

What do I think they want to hear?


God I’m fed up. Got no sleep last night because of my chest infection. My feet ache from the diabetes. Got chest pain walking up the stairs. Only managed half an hour gardening yesterday before my back ached too much.

Nah. No one wants all that. Any of it. We’ve got to be cheerful.

So a lot of conversations are based on a wrong premise, as Dr Johnson said, leaning out of an upstairs window to shout at neighbours. That’s human discourse though.

In hospital the nurses and HCAs often ask you how you are, lying in bed, or sitting out in the chair, making sure you don’t expose yourself through an open dressing gown.

I usually say “fine”. It’s demonstrably untrue of course, but you have to be cheerful or they chide you for being miserable.

So how the devil am I?

I am speaking more slowly than I used to. Taking more time finding thoughts and framing them into sentences.

I noticed the other day that some one was talking very quickly. They amazed me. How can they possibly order their thoughts and sequence them into words that fast?

Tell you what…it’s because they don’t need to think about their words.

They just flow. From whencesoever in their brain they come.

A river, sometimes in flood, sometimes low, but always flowing.

My river is a rock strewn muddy bed, a trickle that meanders around rocks and through sand, into a little pool and out again. Sometimes shallow and wide, sometimes narrow and deep.


The water gets there in the end, but much more slowly than before.

I’ve got some nice slow even flows and I’ve got some rapids. But never enough water to fill the river bed from bank to bank up to the grass.

And what do I think about all this?

Just give me a few moments to think that one out.

I’ll be back in a while.

A manifesto for people centred care

This is my speech to the National Voices Assembly yesterday, in the fabulous architectural gem, the Great Hall, Westminster…

Good afternoon.

What a privilege it is to be invited to speak here.

I came to a conference here last year, in the main hall, and was really looking forward to spending in that great arena, with such wonderful architecture…

Well, it’s a lesson. It’s not the architecture or the building that matters, it’s the people inside. It’s the interactions, the networking, the sharing…the people…You

I want to start a revolution. Right here, right now.

The crisis in healthcare and social care, the result of, let’s be clear, political decisions about funding, means we absolutely have to change.

We have an NHS that provides mostly crisis care, interventions when people become acutely ill, and which cannot survive much longer in the form we know.

We have social care that provides ever less actual care. 400,000 less people supported now compared with five years ago, I read recently.

Carers are turned away when they ask for help, barriers go up, applications forms are given out, assessments made, changed, reviewed…until carers can cope no longer. Then the NHS and the Care system pick up the pieces at huge cost. Carers may be admitted to hospital, ill. Their cared for are admitted to hospitals and care homes.

A year in a nursing home costs £36,000. A week in a hospital costs £2,000. What else could we buy for this money?

We often read about personalisation described as “wrapping services around patients”, like some warm, rose tinted duvet. Has this worked? Is it possible in the current fragmented systems?


What we need is to listen to individuals. Listen when they ask for help. Provide ways for them to get support and information when they need it, and in the form they find useful.

We need to move from a service centred, patriarchal model of health and care to a person centred model.

We need to co-produce solutions individually with people who need care and support. We need to ask what matters to the patient or the carer, to ask what we can provide to help them through challenging periods.

We need to provide support and care at and after diagnosis, not wait for crisis.

We need to invest now to save later.

We need to invest now to keep people at home and involved in their communities.

Social return on investment analysis of social prescribing, signposting, peer and carer support programmes show huge returns on investment. Commissioners should be investing in these schemes to save money spent on crisis management.

We need to invest now in people’s health and wellbeing, by asking them what matters to them. What makes them get up in the morning? What keeps them happy each day?

We need all healthcare and social care to be co-designed with people who now use services or will do in the future. From the start, not as consultees on a model already dreamt up by clinicians or commissioners.

We need citizens, patients, carers, to be co-producers alongside professionals in the design, delivery and evaluation of services.

We should be de facto sitting alongside the professionals and clinicians whom we pay to provide our health and social care to make sure they provide what we want, value and need. We should no longer be passive recipients.

People who have grown up as, or been institutionalised into, being passive recipients of care need to be coached and activated so they can play an active role in living well and maintaining their health.

We need patients and carers all to be fully involved in co-producing living plans which provide real, practical ways of supporting them to live the lives they can and want.

The support I am talking about does not have to be expensive. Peer groups, activity groups, respite periods, dementia or diabetes advisers. Healthy living hubs. Dementia Centres.

Research and anecdotal evidence tell us that what people want are:

a single point of access to all social or health support

Someone who knows them who they can call, email or text when they need to talk or when symptoms change, and who can attend meetings or appointments with them if need be, or help with benefits

Respite when they ask for it

The chance to share problems and experience, and chat to, people in similar circumstances, carers or people living with the same diseases

Information when they need it and in the form that is right for them

A single, shared electronic record which they and their care professionals have access to, and which they can give additional access to, so they don’t have to keep telling their story time and again and clinicians can treat the person holistically

A shared, co-produced living plan, which again they can share with whoever they choose
We must put people at the centre of what we do.

We must stop trying desperately to fit existing service models and pathways around people. These are failing.

We must abandon the traditional hierarchical view that professionals know best about what people want and how they want to live their lives.

We must create a model which allows people to get the support they want, when they want it, and in the form that they choose.

This is not nirvana. It is not impossible. It is not idealistic and perfectionist. We can achieve it.

There is change afoot in the NHS. Vanguard sites are seeking to redefine the ways healthcare is organised and delivered.

There are examples of wonderfully creative projects in the third sector doing just the things I have talked about.

But they are too few and too far between.

We do need some double funding to enable this work to start, but there will be big savings in years to come.

And, which is more, hugely improved health and wellbeing for us all.

This would be a revolution.

I am challenging those in power to give their power up.

To share it with us.

To allow us, and to support us, to live our lives in ways of our own choosing.

You’ve got no clothes on

I’ve just been to a workshop in London run by National Voices, a charity dedicated to empowering people to be engaged in health and care organisations, and in their own care.

Wellness Our Way…Enabling people to influence.


And earlier this week I attended a Healthwatch annual meeting with the theme “parity of esteem for mental health”.

My local Healthwatch had brought together representative managers from local provider NHS Trusts and the Council to talk to us about the work they are doing to address their patients’ mental health.

Camhs, acute health trust, mental health trust, and the lead County Councillor for social care.

Two speakers were refreshingly honest, used straightforward language, admitted shortcomings, explained initiatives and training.

Three speakers were not.

All was well in their respective areas. And even if it wasn’t we weren’t going to find out, or even understand half of what they said.

Speak for long enough and people stop listening. Good tactic.

Speak in jargon and people can’t understand. Good tactic.

Say everything is really good and who are we to know whether it’s true?

I read the board papers for my CCG. Glowing about patient and public engagement. And about dementia care…diagnosis rate now up to 70%. Hurrah.

I asked the mental health manager of dementia services what support there is for people with dementia between diagnosis and crisis. She said there was a 36 strong clinical team in the north and centre of the county supporting people with dementia.

36? Come on. Pull the other one.

I was too taken aback to question it immediately. Had I got something terribly wrong?

(Nah…that must be the community mental health team. There isn’t a community dementia team.)

Oh and there are two staff in the memory service…one doctor, one outreach nurse.

So why am I writing this?

Today we talked about maintaining our resilience as an influencer, a person with lived experience, engaging with providers and commissioners. How do you retain your enthusiasm and energy when the bruise on your forehead just keeps growing?

Some of these commissioners and providers are naked. They ain’t wearing any clothes.


They say they are. They write that they are. They sit together in meetings pretending they are wearing clothes.

But they aren’t.

And I don’t think they even realise it.

Keep repeating an untruth for long enough and it becomes the truth.

Never admit fault.

Never disclose anything you can keep secret.

Keep hold of power.

Use unintelligible business balls language in board meetings about on plan, on target, activity, units, service lines, acceptable variation, harm free incidents…

And whatever you do, keep those bloody patient snoopers away from decisions about how we run our trust.

Oh, by the way, pipes up a NED, “I’m a bit concerned that each one of those statistics is a real person waiting for an operation…”

Good for you.

Hit them with your rhythm stick.

And again.

So how do we influence change and patient engagement, co-production, co-design of services for patients…for…um…US?

We keep at it.

We don’t shout. We don’t lie. We don’t accuse.

We just point out gently did they realise they had no clothes on?

We go on attending meetings, reading reports and minutes, absorbing jargonified double speak, digesting it, and vomiting it back – ever so gently – on a plate in total clarity…

You’ve got no clothes on.

Listen to us. We know the truth.

It’s not like you think it is out there.

Carers can’t get respite because of the blockages you put in their way.

People with dementia don’t get the social and peer support they need now and then to live well.

Self harmers sometimes get treated like animals at A&E. Worse.

Young people with mental health issues (1 in 10) don’t get the attention and care or treatment they need.

And you ain’t got no clothes on.

And we keep telling you.

When are you going to listen

And hear?


UK Dementia Congress 2015

What a brilliant two days. I loved it. Met wonderful people, like joining a great big extended family.

And I learned about lots and lots of innovative, exciting projects going on around the UK, and in the Netherlands.

So I thought I would post the notes I took during the presentations  order that as many people as possible could benefit, find out what’s going on, contact organisers, search the web…

It’s long, I know, but I hope some people find it useful as a synopsis of some of the great things going on.


Helen Sanderson associates…working in Merton…dementia hub…with Alz Soc…

“Working together for change” process for personalised care and support.
By bringing say 20 people with dementia together to say what is working well and what is not. Bringing all services together, and
This could be the approach to create great personalised services in Shropshire.

“Try something new “…Alz Soc services in N and SW Wales
Provide activities suited to people with dementia and their carers.
Has run 145 groups engaging 1718 beneficiaries.
1408 direct participants
Normalising dementia and activities. Alz Soc facilitates starting groups and courses. Then many of the groups continue on their own.
Very wide range of activities provided and facilitated…creative, physical exercise, educational, personal development…

Encourages inter generational relationships by using students to lead some of the workshops, such as art.


Martin Prince lecture…

Consider using cheaper less specialised staff to provide care and support to more people for less cost per person. Use non specialists supported and trained by specialists.

Care co-ordination only really works where care and health systems are integrated. See study in Canada. But care coordination does reduce costs through reduced hospital admissions.

Future improvements and developments should include…
Case finding
Brief diagnostic screening
Making the diagnosis well through productive engagement
Attention to physical comorbidities
Carer interventions to avoid crisis and ill health
Support throughout the journey
Have we overspecialised our model,of care for dementia? Too costly? Not cost effective?

Need system change…

Use community health workers for assessing many long term conditions in the community. And devising the support or care coordination they need.?


Young onset dementia team Stockport

This team formed by reorganising within the trust. No extra money. Just wanted to make it happen.
They did get a grant of £3k from a local church group.

Community based service, not a day care service.
Follows people through whole journey. People are not discharged.
Focus on activities and peer support
“Young onset dementia enjoying life” drop in (Yodel)…meets monthly
Swimming, walking, allotments….art, music,
Education and training…members provide training for health staff and doctors, et al

It works really well for PWD members and for team staff. And they have fun.


Young Dementia UK
Support from clinic to community.

There’s very little support post diagnosis under 65

In Oxford young PWDs are referred to the young dementia UK service. They get emotional support immediately. And they put people in touch with other young onset people, which they find very useful and encouraging.

Offering non medical support at the earliest time possible gives great opportunities for social and emotional activities and support throughout their journey.

The scheme relies on appropriate opportunities existing in the community for members to attend and use.

Developing a service for younger people with dementia
Cardiff and Vale University Health Board

“Dementia. I’m me not my illness”

Started 2011. Supporting 120 out of local 300 prevalence.
Provides continuity for PWDs.
It seems to be a very clinically based service, as opposed to the Oxford Young Dementia UK work.

They provide:
Post diagnosis support group, 7 sessions
Keep in touch group
Walk and talk group, monthly.
Cognitive stimulation groups based on “making a difference” programme
Weekly friendship group
The Tuesday club for inpatients at St Barics unit.
Carers support group meeting…at a local pub.
Carers group for adults with a parent with dementia, monthly.

Work with people not a diagnosis
Value of multidisciplinary team approach
Importance of continuity
Developing ongoing relationships of support
Post diagnosis support group and carer groups


“Support in Dementia”…providing training in acute hospitals…eg project at Whittington health hospital.


Dementia champions on wards
This is me document
Forget me not dementia identifier
Kings fund EHE tools introduced
Volunteers currently being recruited to do activities and pastoral,care with patients with dementia

Dementia champion training still ongoing.

They also started sustained dementia training sessions

Used dementia care mapping…DCM
Sense of competence in dementia scale

“space” assessment tool

Staff were using more time and talking through things more with patients in the second evaluation.

Multi disciplinary Dan multi agency involvement is essential
Evidence suggests care is more person centred now.
And there is increased confidence among professionals
And people and families are more involved in their care.


Royal Free Hospital and south london and Maudesley
Becky Lambert, OT

Looked at discharge process…for people with dementia

Reduced LOS by 2.6 days
Supported many to return to home instead of care.
Issues to face
Bed pressures
Expectations of staff about what the project could achieve…have an easy way of communicating with colleagues what the project aims to do
Difficulty of staying focuses on patient and not the system…identify quick gains and long term goals
Don’t be Reactive not proactive
Ensure you know who else you are relying on

Make sure the person delivering the project is involved in the planning from the start
Be clear about criteria for patents to be included
Collect the right information ant and from patients at the start
Enable flexibility
Work in partnership with family and patient
Be risk positive, not averse

Also it’s really helpful to have support from Alzheimer’s Society to give credibility and researched information to a project.

To be used as an approach across all departments in the hospital.
Toolkit called CAPER being introduced

For details about CAPER


Getting it right for dementia…real solutions for improving hospital care
Alz Soc
Gavin Terry

PWD three times more likely to have a fall in hospital, which then doubles their stay
People’s physical needs are assessed but not their emotional needs, esp for dementia
What do we need in hospitals?
Achievable solutions and practical guidance
Education and training
Hospital dementia strategies
Commitment to dementia friendly environment
Better discharge and post discharge support
High and lower level dementia champions
Excellent leadership from the top down
Incorporation of PWD and carers as active partners in care
Innovative approaches to support hospitals in this work…
Role of third sector, eg dementia support workers or advisers in hospitals
New approach to integrating care (?)
Support for people and carers in hospital from third and voluntary sector workers
Volunteers and DAs working in the discharge process and beyond
See best practice in built environment report on DH website.

A study called SHARED
Warwick Uni Med School

Looking at discharge and post discharge for PWDs
Looking to develop service user led recommendations for improving discharge

Four key areas for improvement
Around discharge planning
Coordination a of health and social care organisations
Provision of specialised support and advice after an extended time in hospital
Quality of daily care delivered by care agencies
Need a single no,instead coordinator of care during and after discharge

Poor communication between hospital staff and patients and carers
Confusion of faces and services
Low expectations of what could be done
Did not meet carers expectation and caused considerable distress
Service users have really influenced the direction of the study and led the data collection and analysis. Very empowering.

There is big variation in services provided post discharge.

Need collaboration between providers and organisations…probably led by a single named coordinator.

Netherlands approach to dementia
Dr Droes

Need new models for how we provide dementia care, and what we provide.

Must download this presentation…brilliant with facts.

Need to move from service centred to person centred and needs centred.

See dawn Brooker’s new book Person centred Dementia Care.

66% of people with dementia are aware they have it.

See startraining.eu

Meeting Centres support programme in Netherlands (MCSP)
For carer and PWD
Activities, consulting hour, social club…collaborative
Very positive evaluation results

125 centres in Netherlands in 2015, from 11 in 2014.

See film

See http://www.meetingdem.eu
Sign up for newsletter

Contact Dawn Brooker for info about uk work.

There are two meeting centres in uk at Droitwich (one one month) and Leominster (in planning)

See on Internet research based info: “Web based information desk…effective care and dementia”
Set up funds from Europe fund.
Running costs from Alz Soc (Droitwich) and Hereford CC (Leominster)
Full time centre manager for each. Plus part time staff.
Droitwich opens three days a week…roughly 15 attendees a day, not the same. Some attend for a day, a half day, two days…
No young onset PWDs at the moment.

Ambulance service…research carried out at University of the West.

Patients attended by paramedics who have dementia are far more likely to be taken to A&E

Risk averse…want best possible care for patient…the only place we can take them is A&E

Calling 999 is often a last resort for carers

Paramedics get very little training about dementia and cognitive impairment.

Crews need to stay on scene a long time when dealing with someone with dementia or cognitive impairment.


Dementia home treatment team, Telford

Started 2013/14

Holistic assessment following referral into the service.

Usually respond to urgent calls on same day. Calls can last several hours.

Activity groups are provided by Alz Soc for service users.

A carer on film spoke very highly of the availability and professionalism of the service. Lots of support after diagnosis, and monitoring, eg of medication and carer.
Included support from admiral nurse.

The service is provided entirely by the SSSFT and commissioned by the CCG.

The staff said they are working to improve links with acute and community care.


Setting up a home treatment service for older adults … Crisis referrals

Cardiff and Vale NHS

Not only for dementia… Includes other mental health issues.

Recognise the needs of carers when their loved one has been admitted and they are suddenly on their own.

£6.34 benefit in costs avoided for each £1 invested.


Craven carehomes quality improvement service (Yorkshire)

Funded by better care fund and 6 GP practices

Included support from Butterfly Scheme.

Working across independent and other carehomes.

Reduction of 30% in A&E admissions, saving £92k.

Reduction of 33% in GP visits to care homes.

Roll out across what enable now being considered by CCG.

Contact sharon.robinson@gp-b8208.nhs.uk for details.


Admiral Nurses

Usually Band 6 or 7. No extra salary for being Admiral.
Training provided for qualified nurses according to experience and learning by Dementia UK.
Might be five or more days face to face plus other training.

Set up fee of £2k when you first e,ply an admiral nurse. No further additional cost.

Ongoing training provided while in-post.

There are four admiral nurses in acute hospitals. They can have more impact than others in hospitals, and can provide more expertise and support for families and carers.


Setting up an admiral nurse service in London Borough of Sutton

Developed attachment based support through establishing relationships with PWDs and carers.

Moved away from the cheque book,approach of providing services along a pathway regardless of personal need.

Went live on 2015.

Used adult quality of life questionnaire

First year
84 families seen by one nurse
All carers reported on self reported quality of life.
Significant cost savings to health £40k and social care £260k in one year.
Kept people away from using services by avoiding crisis.

Benefits of admiral nurse in the local authority social care community…
Support with safeguarding
Supporting families to stay together
Making safeguarding more about support than punishment.

Damian Murphy
Innovations in Dementia
Dementia friendly training and consultancy

“Getting Along”

Re relationships in dementia

Peri-diagnostic support is needed for people in relationships which come under huge strain with dementia.

Need to move away from the stress and burden model of putting blame on the PWD.

You tube film…click on Getting Along.

It equips couples and families to live better with the presence of dementia.

It enables professionals to recognise and respond to both sides of the caregiving relationship

It enables couples to have conversations they have never had before and to know each other’s feelings.

People want and need to talk.

The cost of Getting Along is negligible and can be used by the frontline workforce. Use existing salaried staff. It’s just the cost of the training from Damian Murphy.

Contact dementiafriendly@outlook.com


Conference ideas to take away

Dementia hub
Try something new
Personalisation and desired outcomes…not fitting existing services around PWDs
“Dementia Change” is an organisation that will go into an organisation to change and train and innovate re dementia…hospitals, carehomes…
Find different models for providing cheaper less specialised support in the community. Eg community nurses rather than Admiral. Community nurses could do multiple condition assessments, not just for dementia, for ten or more LTCs, and then facilitate support.
Young onset dementia team, groups…(find out prevalence in shropshire and Telford). Enable people to meet and do things together. Must be 150+ year no onset PWDs. Could Alz Soc start one of these in shropshire? Could memory service put people in touch?
Meeting centres, like in the Netherlands (UK: Leominster and Droitwich)
Dementia home treatment team in Telford…provided by Sssft. Looks pretty good for crisis support.

Has support and services for people with dementia improved in the last ten years?

My speech to the UK Dementia Congress 2015

Ten years ago most people with dementia were undiagnosed. Family members cared for them, or they were placed in care homes. Dementia was little talked about. It frightened people. GPs didn’t have any treatment or cures so they preferred not to refer for diagnosis.

There were memory services and outreach nurses, as there are now, and probably with about the same capacity as now. These services provided diagnostic tests and diagnosis and information afterwards. Aricept was prescribed but limited, not least because of low diagnosis rates and Nice guidance.

I don’t think there was much else to support people living with dementia then.

So, what have we got now?

We’ve had five years of Dementia Friends and much increased research about the disease and about its social effects. Loneliness, isolation, depression…

We have a lot more people living with dementia, with and without diagnosis. With the diagnosis rate now at 66%, about 122,000 more people have been diagnosed in the last eighteen months. The total estimated number of people living with dementia in the UK is 850,000, of whom 562,000 have a diagnosis.

There are outstanding models of great dementia services and support around the country.


Dementia Advisers or Navigators are spreading slowly. These well informed and trained people provide a single point of access and advice for people with dementia and their carers. They help people to live well and to lead fulfilling lives.

There are Admiral Nurse services across the country, but these are geographically sporadic, operating in about 60 locations in England. They provide hugely respected professional advice and support mainly for carers of people with dementia.

There are Dementia Roadmaps, fourteen in England at the last count. These bring together information in one place for primary care staff, for people with dementia and for carers. They include details of local activities, groups, support, sources of information, charities and public sector providers. Fantastic resource but sporadic. We’re developing one in Shropshire right now.

There are dementia cafes, diamond drop in centres, singing for the brain, walking football, men’s sheds, peer support groups for carers and for people with dementia. These are mostly provided by the third sector with very limited funding from commissioners.

Local examples of dementia services include the Stoke dementia primary care liaison team. Herefordshire community dementia service. BUDS…better understanding of dementia for Sandwell. Great services. Useful, relevant. But they can only signpost people to the handful of support groups that exist.

There is a growing network of Dementia Action Alliances across the country, volunteers and local businesses and organisations working to make their communities more dementia friendly.

Hospitals are beginning to create dementia friendly environments, and this is now included in the annual PLACE audits. Hospital staff are provided with dementia training on induction, and many are doing more in depth courses to become dementia champions on wards.

A new Dementia Friendly Hospitals charter is available for Trusts to work towards, and some are doing so.


How many people actually attend the support groups? 10 or 15 per session? Often the diagnosed and the carer. And they go back several times, perhaps for years. So twelve meetings of a peer support group might support 15-20 people in total each year.

In Shropshire we have 5,000 people living with dementia. 3,000 diagnosed. 2,000 living in the community. Plus their carers. That’s around 2,000 diagnosed, plus 2,000 carers, plus 2,000 undiagnosed, and their carers. 8,000 people needing support at times. Only about 300 of them access groups, support or training each year.

That, my friends, is a disgrace. And it’s happening all over the country.


It is quite literally a post code lottery as to whether the services exist near you.

Let’s not pretend that a handful of wonderful support groups and dementia advisers and carer support courses means we’re doing well. It is a drop in this ocean of 850,000 people living with dementia.

I estimate that between 5 and 10% of people with dementia and their carers ever attend support groups or training courses. Or have a dementia adviser.

A recent survey in the West Midlands showed that 10 out of 14 local authority areas claim to provide dementia advisers to all those diagnosed. But only 20% of individual respondents had ever heard of them. And only 12% of carers said they had accessed respite support.

So well over one million people affected by dementia in the UK get little or no support.

And that is a disgrace.

Has any more spending gone into supporting the extra 122,000 people with diagnosis in the last 18 months? I can’t see it.

That is a disgrace.

Carers who can’t cope ask for respite. Councils say no. Put up barriers. Hand out application forms. The carer gets sick. The person with dementia is admitted to hospital or care. What does this cost? Fifty times the cost of two hours respite through a funded charity.

This is a crisis. We must fund carers to stay healthy, have a rest, take a holiday, and we must keep people with dementia in their communities, at home.

Cancer diagnosis, treatment and support has rightly been hugely funded and resourced. Someone told me the other day that when her mother had cancer they had so much support it became tiring and confusing. When her father developed dementia there was nothing.

That really is a disgrace.