THEDEMENTIACHALLENGE Leading the way in Torbay

The latest figures show that there are at least 800,000

people with dementia in the UK. The condition mainly

affects older people (aged 65+). But the UK is also

home to around 17,000 people under the age of 65

who are living with the illness.

The associated costs to the economy are around

£23 billion. If current trends continue it is estimated

that by 2040 the number of people affected will have

doubled - and the costs are likely to have trebled.

Introduction‘Dementia’ is a term that is used to describe any condition where a variety of different brain functions such as memory, thinking, recognition, language, planning and personality deteriorate over time.

TheDementia Challenge

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The Dementia Challenge was launched in March 2012 by David Cameron to tackle what is now considered to be one of the biggest issues faced by modern society.

It is an ambitious programme of work designed to

make a real difference to the lives of people with

dementia and their families and carers.

The Dementia Challenge is focussing on the three

following key areas and aims to:

Drive improvements in health and social care:

by asking care homes and services to sign up

to the ‘Dementia Care and Support Compact’-

which sets out new standards for dementia

care.

Create ‘dementia friendly’ communities that

understand how to help: While it’s very

common, dementia is not very well

understood. People often don’t ask for help

because there’s a stigma attached to having

the condition.

Provide better research into the condition:

Scientists understand less about dementia

than they do about other major diseases

like cancer or heart disease. To increase

scientific knowledge of dementia - and

potentially make new treatments possible

- the Government will be increasing annual

funding for dementia research to around

£66 million by 2015’. For more on the dementia

challenge go to: www.gov.uk/government/

policies/improving-care-for-people-with-

dementia

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Overall Population Figures (2011 census - Torbay Council)

ALL

England 53, 012, 500

5, 288, 900

131, 000

26, 069, 200 22, 063, 400

2, 590, 600 2, 264, 600

63, 100 59, 000

26, 943, 300 24.0 16.3

22.6 19.6

21.1 23.6

2, 698, 300

67, 800

Population Males Females Households0-19% 65+%

South West

Torbay

Leading The Way In Torbay Torbay is an area with where nearly a quarter of the

resident population is aged 65 and over (23.6 %). This

figure is significantly higher than the rest of the South

West and England (See table below- figures from Torbay

Council). This means a higher percentage of residents

in Torbay will be in the age group that is likely to

develop some type of dementia.

Dementia in Torbay

It is estimated that there are currently at least 2,700

people living with dementia in Torbay. With help, many

dementia sufferers are able to continue to live at home.

But about a third will develop complex or medical

needs and will require additional support. It is likely this

group of individuals with dementia will be living with

the condition - sometimes for several years - in one

of Torbay’s 100 registered residential or nursing care

homes.

The Torbay Dementia Action Alliance and ‘The Purple Angel - We are Dementia Friendly Campaign’

In January 2012 local resident and dementia sufferer

Norman McNamara and his wife Elaine set up the

Torbay Dementia Action Alliance (TDAA). They went on

to make national news when they launched their ‘Purple

Angel – We are Dementia Friendly’ campaign. Their

vision was to make Torbay the

first dementia-friendly resort in

the country. The TDAA started

to raise awareness of dementia

- ‘the condition’ - in Torbay

by canvassing ‘front-facing’

businesses on the high street.

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‘Where dementia-friendly communities are working’ - Alzheimer’s Society

The Torbay Dementia Action Alliance (TDAA)

The Torbay Dementia Action Allianceand Healthwatch Torbay

Healthwatch Torbay

‘The Torbay Dementia Action Alliance aims to raise

awareness of dementia by directly approaching

businesses in the local area armed with information

about dementia. The Alliance asks the business or

service to make sure that all staff read the information

and provide contact details if staff do have any

questions. The Alliance follows up after a few weeks to

check on progress.’

‘The Alliance has already had success stories. For

example, staff at the Wilkinson’s store in Torquay

noticed a shopper who became very confused and

agitated. As the staff had recently read leaflets from

the Torbay Dementia Action Alliance, they recognised

that the shopper could have dementia and remained

patient while they calmed her down. Eventually, the

staff managed to gently persuade her to give them

a phone number of a family member who came and

took her home.’

Following the success on the high street the TDAA

wanted to extend their ‘Purple Angel – We are

Dementia-Friendly’ campaign by offering dementia

awareness training to care home staff. Norrms hoped

that by creating a practical guidebook giving an insight

into living with the condition, it would have a positive

impact on care home staff and improve services for

people with dementia living in residential or nursing

care homes.

Healthwatch Torbay, the local consumer watchdog

for health and adult social care services wanted to

work with the TDAA to help them produce the practical

guidebook for care home staff. Public Health were

able to offer some funding to enable the joint project

between Healthwatch Torbay and TDAA to proceed.

Norman (Norrms) and Elaine McNamara

The Torbay Dementia Action AllianceFounders

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Aims and Objectives

The Methodology

Since April 2013 (as a result of the health and social care

reforms) Public Health teams have become part of the

Local Authority; allowing greater access to community

staff and/or organisations who are able to identify their

own needs and advise how those needs could be met.

This project was designed to identify the impact on

health and social care services when the service users

(local community group Torbay Dementia Action

Alliance), not the statutory sector, were at the centre of

the process.

The aims of this project were developed with Public Health Torbay, who were the sponsors of this project.

The aims of the project were to:

Be grounded in real work and not pure

aspirations.

Be flexible and follow where the project

work leads us.

Keep records of the work undertaken,

including what doesn’t work as well as

what does.

Evaluate but make information simple

to collect.

Take the lessons learnt from the project

and expand into other areas of work.

Ensure that those undertaking the work

on the ground direct the project

and own the results.

The objectives of the project were to:

Raise awareness of dementia in Torbay.

Improve the life experience for a person living

with dementia in Torbay.

Identify any gaps in local health and social care

services for individuals with a diagnosis of

dementia in Torbay.

Improve confidence/awareness and

knowledge of care home staff working with

people with dementia in Torbay.

This project was set up so that Healthwatch Torbay

(HWT) would ‘follow’ the work of the service users (in

this case the TDAA) - not lead them. The role of HWT

was to act as the facilitator; providing administrative

and editorial support when required. In order for us

(HWT) to be able to work this way we had to allow for

a degree of flexibility; so we drafted a plan of what we

hoped the partnership between HWT and TDAA might

achieve using months as milestones.

The Project

The project had to be truly user-led. That meant that as Project Manager I needed to listen, and to trust Healthwatch Torbay and the Dementia Action Alliance to work together in the way that they designed…Their project is making a difference to people with dementia, their Carers and professionals.

GERRY CADOGANPUBLIC HEALTH TORBAY

The Project Sponsor (Public Health) wanted to identify how devolvingleadership to users and Carers would impact on outcomes

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June/July 2013

Public Health Torbay develops a draft project plan

in partnership with Healthwatch Torbay and Public

Health England. It is understood that this is a flexible

framework, as it is the user led approach that will set

the agenda.

August/September 2013

Norman and Elaine McNamara - TDAA, Jill Perry -

HWT staff member and Kevin Dixon - HWT Volunteer

meet to discuss perceived gaps in local dementia

services, the Purple Angel award and producing a pack

providing awareness training for care home staff.

October 2013

HWT invited Norman to talk to staff, HWT Volunteers

and HWT Champions about the Purple Angel

Campaign and the work of the TDAA. On Monday the

7th of October HWT was awarded the Purple Angel –

We are Dementia-friendly award.

Pat Harris Chief Executive, HWT said, “The talk was

memorable – Norman spoke in great detail about his

condition and the effect it has had and is having on his

life. But it wasn’t until Elaine, his wife described his night-

time terrors that the reality of what it must be like living

with dementia really hit home”

The project changed hands (Jill Perry moved to

another organisation) - 1st meeting between Gilly

Greenham (HWT) Normms and Elaine (TDAA).

On the agenda:

Expanding The Purple Angel campaign in

Torbay by taking it to businesses in Brixham.

Joining-up of both groups of volunteers to

distribute information about dementia to

businesses in Brixham.

Developing and producing a dementia

awareness booklet for local care home staff.

November 2013

Norrms (TDAA) provided a collection of written items

including his introduction and thoughts on how to

provide practical and emotional support to a person

with dementia.

There were additional items from a care home

manager (Chantelle) and several lists of care home

activities, all for the proposed booklet.

Three editorial meetings were held between HWT and

TDAA to discuss the content and design elements of

the booklet. A member of HW staff and HW volunteer

attended the November TDAA steering group meeting

to discuss the working together on the Purple Angel

project to raise awareness of dementia and customer

care in Brixham.

The care home booklet was signed off at the

November TDAA steering group meeting. It then went

through a final design process and was printed by the

Torbay council printing department at the beginning of

December 2013.

December 2013

G8 Summit Week: London hosted International Summit

Meeting on Dementia. Health Ministers and Dementia

Experts gathered to discuss and an international

approach for future dementia research.

Dementia was in both local and national news every

day: HWT sent out a press release to promote the

care home booklet in the local newspaper (The Herald

Express). The item was called ‘New Guide will help Staff.’

(See additional items.)

HWT and TDAA Volunteers made plans to cover

Brixham and distribute The Purple Angel – ‘We are

Dementia-Friendly’ information on Saturday the 18th

Jan 2014. (Date was later changed to 8th Feb, then

postponed once more due to inclement weather – it

finally took place 8th March)

The Milestones (Diary)

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January 2014

A Guide: Supporting people with dementia in a care

home.

The Pilot

Early in 2014 (following the Christmas break) the care

home project progressed onto the pilot stage. A mix

of 30 local residential and nursing care homes all

providing dementia care were chosen from the HWT

database. (This was about 25% of registered care

homes currently offering dementia beds in Torbay.)

Piloting the project allowed us to evaluate the guide

and the method and make changes/improvements.

The breakdown of homes is as follows:

5 homes in Brixham, 10 homes in Paignton,

15 homes in Torquay

HWT volunteers put the ‘pilot packs’ together and sent

them to either the named manager or owner. The

pack consisted of an introductory letter (HWT), several

booklets (HWT+TDAA) and knowledge papers (TDAA).

See attached items.

Volunteers helped with the follow-up calls. Calls were

made approximately 10 days after the packs were sent

out. The follow up calls provided an opportunity to

check the home had received the information and to

gauge the reception; discuss the pros and cons of the

project.

February 2014

Two homes responded immediately by returning their

completed forms the following week – but the majority

needed far more prompting. Volunteers helped to

make the follow-up calls. (Sometimes this was quite

difficult because the volunteer making these calls

needed plenty of confidence) See findings.

March 2014

Follow-up calls to care homes were still being made.

Saturday 8th March, HW Volunteers joined TDAA

Volunteers in Brixham. They canvassed for about 2

hours working in 3 or 4 teams of 2 they managed to

sign up 152 businesses/shops to the ‘Purple Angel – We

are Dementia Friendly’ campaign.

April 2014

About 30% of care homes from the pilot had now

returned their knowledge papers – start booking talks.

Two talks now confirmed for week 3 (Tue 20th)

and week 4 (Tue 27th) of May in Brixham. We have

managed to bring some staff together from 2 groups

of sister homes enabling us to cover more ground – so

will cover 4 homes in all.

(Norrms and Elaine will be away for most of June –

so any further talks will have to be booked for July

onwards)

(Norrms to speak about dementia at the Women’s

Institute (WI) convention in May in Exeter – we were

able to set this up for him through our contacts)

May 2014

Checked with Norrms and the care home was all still

okay for talk next week. Arranged cakes and parking.

Matron assured us that staff are looking forward to the

talk. (So was I actually – knowing how moving it was

going to be)

First awareness talk at the ‘Three Corners Nursing

Home’ in Galmpton, sister home with ‘Hill House’ in

Brixham great success. Well attended by staff from

both homes.

Norrms began his talk by talking about his background

and the person he was before he became ill. He

followed with his experience of living with Lewys body

dementia. He then went on to talk in general about care

home residents and said, “Like me the residents you

care for on a daily basis were once like yourselves; a

normal fully functional human being living a normal life”,

“Don’t forget they might not be able to speak to you

anymore but that doesn’t mean they can’t hear you”,

“Comfort them when they are distressed – it helps me –

so, it will help them too”.

June 2014

33% of care homes in the pilot have already completed

and returned their forms – we are currently liaising with

Norrms to arrange further talks.

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Vicky BundyManager at The Three Corners Nursing Home, Churston

The talk from Norman has had a huge impact on my staff – They have all commented on the fact they are now looking at the people they are supporting who have dementia in a completely different light… It’s been Brilliant!

Norrms awarding the first Purple Angel of the Care Home campaignto The Three Corners Nursing Home

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FindingsIn both cases it really helped to have a person like Norrms as part of the team. He does after all talk from personal experience and this is one of the reasons people want to listen to him.

Findings from the High Street in Torbay

Learning from the Care Home project

It was important to get onto the street early

– the teams always meet at 09.00 hours

before the shops get busy.

The area was broken down into streets and

shops were then approached methodically

(one side of the street at a time).

It is also very important that the style of any

promotional material used for the ‘on the high

street’ campaigning is as attractive and simple

as it can be; information should always be

presented in plain English - avoid jargon.

HWT volunteers teamed with TDAA volunteers

– no prior training needed – it was more learn

as you go.

Shop owners were very receptive, possibly

because there is nothing to sign and not much

paperwork. (They were just supplied with one

A4 sheet containing information about

dementia and how to care for customers with

dementia). Some volunteers were given a free

cup of coffee. And the local yacht club offered

to hold a quiz night to raise funds for

Young Dementia UK! (Dementia is considered

to be ‘early onset’ when it affects people under

65 years of age.)

Many follow-up calls were needed to check the

home had received the information, and to

gauge the reception; we made on average 8

calls per home before receiving completed

knowledge papers back. (Maybe a deadline in

the letter would have been useful) These calls

did though provide an opportunity for

feedback and to discuss the pros and cons of

the project. It was also a good time to offer a

talk about HWT and TDAA to staff and

residents.

Most homes were already familiar with the

work that Norrms had been doing locally and

were keen for him to come and talk to staff.

Most of the homes needed additional books

and knowledge papers. This was because of

the staff numbers. (The homes were initially

only sent 2-3 booklets and some of the bigger

homes with 60+ staff needed at least 20).

We found that several homes were without

a manager in post – this was due to sickness,

annual leave or staff vacancy.

Most managers said it would take several

weeks to get 95% of staff to complete the

forms – because the majority of employees

worked part-time shifts and were very busy.

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It began with local community volunteers from the

TDAA promoting dementia awareness on the high

street and concluded with a dementia sufferer talking

about his personal experience of living with dementia

to care home staff.

The TDAA had already identified that dementia services

in care homes could be improved by offering simple

awareness training to staff. They wanted to back-up

the awareness training with a booklet (and knowledge

paper) that care homes could keep and refer back to.

This learning experience is definitely enhanced when

the training is delivered first hand by a dementia

sufferer (in this case Norrms).

There is no doubt that Norman McNamara made this

project very special. He is well respected within local

and national dementia circles and has a reputation for

passionate public speaking – this was definitely a selling

point for us when gaining access to the care homes

and approaching businesses on the high street.

The relationship between both organisations worked

well. Regular meetings were held and telephone

conversations took place at each vital stage to ensure

individuals were happy with the progress being made

and happy to continue moving forward. This project

did need a partner agency to facilitate from behind

the scenes and without this input there was a chance

it could have either run out of steam or gone off at a

tangent.

It also took longer than initially anticipated to get from

‘sending out the care home booklet to awarding the

first care home Purple Angel’. This was mainly due to

the delay in getting the completed knowledge papers

back from care homes.

Now we have completed the first talks we are hoping

that the word will get round (Healthwatch Torbay -

will write another press item) and the remaining care

homes will be more motivated to get their knowledge

papers back.

It is improbable that we would have achieved such

progress unless responsibility for the delivery had

been handed to the TDAA and HWT. Public Health

Torbay, the strategic leader of the project, identified that

Norrms charismatic leadership was key to outcomes.

ConclusionFrom the start this project was grounded in ‘real work’ with a ‘bottom up’ (not top down) approach and was based on the belief that the leadership should be devolved to the users and their Carers.

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The following is the comment from Vicky Bundy,

Manageress of the Three Corners Nursing Home:

“The talk that Norman gave to my staff has had a huge

impact – they have all commented on the fact they

have a better understanding of dementia and they are

now looking at the people they are supporting with

dementia in a completely different light”

Working together (TDAA and HWT) have been able to

make contact and have a positive impact on owners or

care managers from about 100 care homes across the

Bay – this should open doors for future projects.

Healthwatch Torbay has now produced a short

film with Norrms to compliment the booklet. This is

because it isn’t realistic for Norrms to deliver his talk to

staff at all the 100 local care homes and he is, sadly, (by

his own admittance) in the middle stages of dementia.

The film lasts just under five minutes and features him

talking directly to camera following the same script he

uses and gives a first-hand account of living with the

condition. It is currently available to view on YouTube:

https://www.youtube.com/watch?v=nS3Zs-2vTsc

The film will also be made into a DVD so that it can be

sent out with the booklet.

Norman and the TDAA are well known throughout

dementia circles and has used his extensive list of

contacts to distribute the booklet; including Barchester

Care (one of the UK’s largest care home providers –

200 homes) who have agreed to make the booklet

available to all its care home staff.

The LegacyNorman is a charismatic and passionate speaker – he has a resounding effect on all those who come to listen to what he has to say about what it is like to live with dementia.

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During 2013/14 there have reports in the press, TV and

radio about poor care in residential and nursing homes:

Care workers with no training in specialist conditions

such as dementia working with residents who can

sometimes be quite difficult has resulted in poor job

satisfaction and a high staff turnover. This could be

improved through better staff management, improved

peer group support and better training.

The recommendations are as follows:

The Care Home booklet could be given to all

new members of staff who are going to be

caring for or supporting individuals with

dementia (As part of a comprehensive and

ongoing training package). The benefits of

raised awareness will not only result in a

more confident and knowledgeable workforce

- but should improve staff retention rates

Information from the Purple Angel Dementia

Awareness campaign could be included in a

module for the Health and Social Care

NVQ diploma courses that are offered through

the City & Guilds qualification (developed to

help meet dementia strategies for the UK

to improve health and care services

supporting individuals diagnosed with

dementia)

RecommendationsBy the time a person with dementia requires full time residential or nursing care they could be as needy as a new born. Once a fully functional member of society; going to work, running a household, or even running the country, they will now be reliant on someone else for help with even the most basic daily tasks.

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Additional external comments about:‘A Guide: Supporting people with dementia in a care home’

Jane Reddaway - Falls Prevention Lead(Torbay & Southern Devon, Health and Care NHS Trust)

I have just come across your guide and I think it’s a really useful booklet

Tammy Jones(South Devon Dementia Learning Community)

I have now had the pleasure of reading the guide you have produced for care homes. I found the guide to be really informative and easy to understand. Really sound advice regarding activities; it will be a great success in care homes

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Anne Farr(Care Home Manager)

This is written in a way that people will want to read it... User friendly – lots of good information on how to provide person centred care

Anita Moran(Dementia Ambassador)

I love it! Really straight forward with no fancy words, written so anyone can read it - full to the brim with lots of information and tips

Additional documents:

Care Home Booklet and accompanying knowledge paper

Press Release

Newspaper item

Dementia Awareness Training DVD (to follow)

Healthwatch Torbay, Paignton Library & Information CentreGreat Western Road, Paignton, TQ4 5AG

www. healthwatchtorbay.org.uk

Email: info@healthwatchtorbay.org.uk • Telephone: 08000 520 029

HealthwatchTorbay@HWTorbay

Norrms, Torbay Dementia Action Alliance andGilly Greenham, Healthwatch Torbay

Healthwatch Torbay would like to thank Norman and Elaine McNamara from the Torbay Dementia Action Alliancefor making this project possible. We would also like to thank:

Public Health England for funding this project.

Volunteers from TDAA and HWT for their help along the way.

Sam Ebden HWT Trustee and Care Home Manager.

Nick and Steve at Highrize Productions.

fwd:motion - creative design agency

The Care Home Managersand Staff who took part in the Pilot.

Registered Charity No. 1153450