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.


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

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 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.



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.

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