The QNI & Health Education England Dementia Conference

The QNI held a Dementia Conference, funded by Health Education England on  Monday 12th June 2017 at RCGP, London.

You can download the slides from the day below.

Dr Crystal Oldman welcomed delegates and spoke about her personal experience of dementia within the family. She introduced the day’s speakers and spoke about the challenges and potential solutions that are becoming available to improve dementia care within the community setting.

Dementia Education: Where are we now?
Professor John Clark

Professor Clark spoke about the range of support that Health Education England offers to healthcare practitioners who are coming into contact with people, families and carers living with dementia.

He reminded delegates about David Cameron’s 2020 Dementia Challenge and went on to describe the three levels or tiers of training for those who are giving care to those with dementia. 800,000k NHS staff have now received some dementia training.

He said that a key question for educators was, ‘what training really makes a difference?’

He talked about initiatives in diverse media including film – the well known film ‘Barbara’s Story’ and those that have followed it. He then introduced the HEE film, ‘Finding Patience’ which aims to raise awareness of dementia within BME communities.

Living with Dementia
Dr Christine Wise

Dr Wise has blogged about living with her husband of 40 years, who has dementia. He was diagnosed with young onset dementia aged 56.

She spoke about the challenges that this presents, including:

• Losing the ability to organise cooking and preparing meals.
• Losing the ability to categorise things within the home, to remember where they may be.
• Losing the ability to manage buttons and to recognise the significance of things like warning lights.
• Losing the ability to judge distances and to have spatial awareness of his own body – such as knowing where his limbs are at any one time..
• The change that can happen from day to day, for example in mood, and in ability.
• Things that help, such as labelling containers, improving lighting, putting down hard flooring.

She conveyed the intense sadness of their situation and the knowledge that ‘the man that I married is leaving me, and there is nothing I can do about it.’

Questions to Dr Wise

Delegates responded with their own comparable experiences of living with dementia.

Q: What support have you accessed?

A: The memory clinic at the local authority was ‘useless’.
Health services in the main were not well prepared to offer support.
Alzheimer’s Society offer a ‘taking point’ service that is very useful.
She has used the phone service of Admiral Nurses
She also spoke about a high fat, low carbohydrate diet she and her husband are now following that is designed to protect neurons and encourage their regrowth.

Admiral Nurses – Leading the way on dementia care
Dr Hilda Hayo

Dr Hayo spoke about the clinical aspects of dementia. There may be 200 different types of dementia. It is primarily a risk factor for those over 80 years of age, when one has a 1/3 chance of developing some form of the disease. However it can develop at almost any age and the youngest person on her caseloads is18.

There are 63,000 people estimated to be living with young onset dementia in the UK. Often they have multiple conditions requiring complex, holistic care in their own homes. It is vital that we prepare and upskill the workforce to deal with this.

There are currently 200 Admiral Nurses and this will rise to 300 by next year.

There is a strong link between dementia and a range of lifestyle choices including smoking, diet, and exercise. These are modifiable risk factors.

Dr Hayo gave an overview of the history of the charity and then described the support that it offers. They have three tiers – Advice, Support and Acute care. They help to build resilience in families and help them to maintain relationships.

Discussion

Q: There was a discussion about the use of the terms ‘senile and pre-senile dementia’. Dr Hayo explained that these terms are not used any more, though you may still find them in the literature.

Q: What is being done to raise the level of dementia education within Higher Education Institutions (HEIs)? John Clark said that the NMC is currently consulting pre-registration standards that affect this.

Q: what is done to gather intelligence from families and carers about what works and what doesn’t work, and what support they need?

Discussion – we need feedback to decide what interventions and support are most cost-effective. Everybody’s experience is unique. People with a new diagnosis will read about worst case scenarios online and this can be extremely upsetting. Post-diagnostic support is vital. We cannot predict the future and how the disease and treatments will develop.

People are reluctant to talk about advance care planning – frightened to talk about it. Admiral Nurses are trained to speak to families about this.

There is currently inequity affecting people during the end of life process. During palliative care, families need physical, emotional and psychological support from services. Sometimes these things are provided by different healthcare teams and sometimes these do not adhere to the plan that has been agreed.

People – families and carers – also need support during the grieving process. Services should support people until they are ready to move on (post-bereavement work).

There is also work to be done on the pre-diagnosis aspect. People are reluctant and hesitate to go to the GP even if they suspect something is wrong. This can lead to delayed diagnosis.

Finding Patience – The Later Years
Professor Jan Zietara

Professor Zietara introduced the HEE film, ‘Finding Patience, the Later Years’ which continued from the film shown earlier in the agenda. It shows Patience when she is living in a care home.

The film shows the kind of behaviours that services should try to promote, and also shows the kind of behaviours that should be challenged, but which can happen for example if staff are overstretched with a high workload.

By 2051, 2 million people in the UK will be living with dementia. One third of these will be in care homes.

Working Together to Support Dementia: The STEMS Model
Caroline Ellis

Caroline spoke about her work as a Memory Assessment Nurse in Cornwall. The ethos of their work is to support patients with limited chance of recovery until the end of life, thus ensuring continuity of care.

They are piloting a scheme called STEMS – Support Talks and Educational Memory Sessions.  This aims to provide one holistic access point to the service. The service was audited in 2016 and estimated to have saved £23k in one year.

Challenges are:

• Growing caseload
• Social isolation that can occur in a rural community – for example in farming families.
• Barriers to people engaging with services
• Lack of services that are designed with older men – for example farmers – in mind. There are not many facilities designed for men.

Q: What assessment model do you use?
A: Ace III – more information here.

Q: If people don’t attend STEMS sessions how do they connect with the service?
A: Through referrals from other practitioners, GPs.

The Role of NHS Health Checks
Professor Jamie Waterall

You can read Professor Waterall’s presentation via Prezi here.

Professor Waterall spoke about the national Health Checks programme. This began in 2009 and 1.5m people are eligible for it each year.

This programme invites people to visit their GP practice when they are aged 40 and assesses them for risk of CVD, diabetes, kidney disease, stroke and other diseases affected by lifestyle factors.

He posed the question, can the programme help prevent dementia in those over 40?

He said a third of dementia cases could be related to lifestyle choices, including exercise, diet, alcohol and smoking, which have an effect blood pressure, cholesterol levels, etc.

5.2 million people have had a health check to date. Local commissioning has helped reach more local people who might not have accessed services otherwise.

‘What is good for the heart is also good for the brain.’ (Karen Leach).

Innovation in Practice – Caring for People with Dementia in Care Homes
Julia Atherton and Caroline Baker

Julia spoke about the initiatives currently being used in Barchester Healthcare, a national company that operates care homes.

Their 10-60-06 programme is an accredited staff training programme co-ordinated by a team of eight specialists in dementia care. More information is on their website.

There are 10 main themes in the training programme. There are four levels of training.

Some key features are involving residents and families, reducing distress, improving wellbeing, reducing unnecessary medication, and addressing nutritional needs.

The training programme lasts six months. Accreditation visits are unannounced.

Techniques they use include a Namaste room, digital slide shows, ‘Oomph’ sessions, and ‘Getting to Know Me’ board game and notebook.

Measures have been successful – for example, a reduced number of falls (11%), reduced incidence of depression, fewer distress reactions (22%) and reduced use of anti-psychotic medication (17% reduction). 38% of residents have gained some weight and staff turnover has fallen.

Summary and Close

Dr Oldman summarised the learnings of the day and thanked Health Education England, all of the delegates and speakers for their participation, and in particular Christine Wise for her moving account of her experience of being a full time carer for her husband.