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First published August 2016

This edition April 20-17

© Alzheimer‟s Society 2017

All rights reserved. No part of this work may be reproduced,

downloaded, transmitted or stored in any medium without the written

permission of the publisher, except for personal or educational use.

Commercial use is prohibited.

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CONTENTS PAGE

Acknowledgments

4

Introduction 5

The Alzheimer’s Society

Reminiscence

A couple’s story

Information Worker/Dementia Café Coordinator A wife’s story

Memory and Dementia Services, St George’s Hospital, Stafford

A granddaughter’s story

Age UK South Staffordshire A wife’s story

A daughter’s story

Stroke Association

A wife’s story

NHS Foundation Trust Arts for Health Project

A son’s story

Staffordshire Archives and Heritage Service

A mother and daughter’s story

Jackson Perry Legal Services Ltd

A daughter’s story

Volunteer at the Living Well with Dementia Café CASS (Carers’ Association of South Staffordshire)

A wife’s story Carewatch

A husband’s story

Home Instead

A daughter’s story

Revd Rachel Dale, Rector - The Watershed Benefice

A son’s story

A final word from Mark Sutton ,Cabinet Support Member for Social

and Health Care, Staffordshire County Council

Factsheets and useful contacts

7

9

10

12

16

17

19

20

22

23

24

25

27

29

32

34

36

36

38

40

42

44

45

46

49

51

55

57

59

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Acknowledgments

We would like to thank the many people who took part in the production

of this publication. These include, but are not limited to:

Funding received through the Staffordshire Local Community Fund and

supported by Staffordshire Councillors Brian Edwards, Keith James,

Robbie Marshall, Mark Sutton, David Williams and CPO Sarah Garner;

the South Staffordshire Partnership through South Staffordshire Council;

and the Alzheimer‟s Society

Mr Chris Curtis, Assistant Head of Wolgarston High School and the

pupils of Wolgarston High School: Milly Boult, Chelsea Woollett,

Jasmine Machin, Holly Hyde, Tyler Cattermole, Lauren Grew, Beth

Patten and Jade Nomicas

All of the contributors to this book, professional‟s, statutory and third

sector, politicians, carers, people living with dementia, and volunteers.

Melanie Baines

Fiona Doney, Kanyini

Paul Howard, Pesky Computers!

Lindsey Smith, Alzheimer‟s Society

David Latcham, Alzheimer‟s Society

Our images have been supplied courtesy of:

Codsall and Bilbrook History Society

Staffordshire Museums Service

County Archaeology Department

Copies may be requested from Staffordshire Heritage and Archive

Service, Stafford

And finally, we could not have compiled this book without the clients,

volunteers and people associated with:

Living Well with Dementia, Codsall – Carers‟ Association of South

Staffordshire (CASS)

Café for Carers and Cared for, Penkridge – Carers‟ Association of South

Staffordshire (CASS)

Kinver Dementia Café – Alzheimer‟s Society

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Introduction

by Nick Hancock

If you are reading this then

my guess is that you are

either someone who has an

interest in dementia, has

been diagnosed with

dementia, or are a relative or

friend of someone who has

been diagnosed with

dementia. You may be

wondering what the future

holds for you, and how other

people have managed in a

similar situation.

As a television presenter, my

role is often about being

entertaining and making

people laugh. Having

dementia is no laughing

matter but what I want to promote is that with the right support at the

right time, you can enjoy life and have fun.

So what‟s my connection to this book? I‟m a local boy, born and raised

in Staffordshire with close ties still to the local area. The stories you will

read in this book are local stories about real people living with dementia.

These stories were captured by pupils at Wolgarston High School who

have an interest of dementia as part of their volunteering experience

during 2015. They met with families and professionals in South

Staffordshire who have either been directly affected by, or who support

people affected by dementia.

The message from all of them is clear – you are not alone.

Information, advice and support is widely available in various formats to

suit all ages and abilities. One way you can find advice is through factual

information that can be downloaded from the internet – you will find

many links to helpful factsheets from the Alzheimer‟s Society website as

you read through this book. Some of the factsheets are available in

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audio format, and there are many podcasts available too if you prefer

video (links to these can be found at the back of the book).

But the stories also show that you can get support in many, many other

ways. From the medical support you are receiving from your GP and

other NHS services, from your local Dementia Adviser or support

service, through to attending local dementia friendly groups and

activities.

For information on all of the above please contact your local Dementia

Adviser Service on:

01543 593736

Just as important is the kind word, patience and understanding from

those around you as you go about your daily lives. The Dementia

Friendly Communities initiative promotes the idea that everyone from

policy makers and health and social care professionals to the local

corner shop, hairdresser or barber, share part of the responsibility for

ensuring that people with dementia feel understood, valued and able to

contribute to their community.

This initiative was the inspiration for this book – the desire to enable

older members of the community to share their experiences with

younger members so that they have a better understanding of what is

like to live with dementia or care for someone with dementia.

I hope that these stories will inspire you to reach out and ask for the

support you need, and raise your expectations that you can live well with

dementia in the communities of South Staffordshire.

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The Alzheimer’s Society We are the UK's leading dementia support and research charity, here for anyone affected by any form of dementia in England, Wales and Northern Ireland. We provide information and practical and emotional support to help people live well with dementia. This is done in four ways:

An online forum called Talking Point, accessed from their website

A national telephone helpline, the National Dementia Helpline

Local support and advice services delivered from our Cannock office

A wealth of factsheets and podcasts on their website

Our online forum, Talking Point is a helpful online community where anyone who is affected by dementia can receive valuable support. On the forum help is provided through shared experience and peer support. It's free to access Talking Point, day or night, you just need an internet connection. You can:

ask for advice read other people's stories offload your concerns about dementia share helpful information.

A second way to access help is via the National Helpline on:

0300 222 1122

Trained National Helpline Advisers can provide information, support, guidance and signposting to other appropriate organisations.

Local information, support, guidance and signposting to appropriate organisations is provided by their Dementia Adviser Service. For support from a named Dementia Adviser call:

01543 573936

If you have a diagnosis of dementia and would like to influence others to provide better services or campaign to raise awareness of dementia, then you may like to join our local review panel. To join the group call:

01543 573936

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Our website has factsheets covering a wide range of dementia-related topics; there are links to some of these throughout this book. Many of the factsheets are also available in large-print or audio format. There are also a variety of podcasts available.

We invest in world-class research with the ultimate goal of defeating dementia. We fund research that seeks a cure and identifies better ways of caring for people with dementia. We also campaign to improve public understanding of dementia and the devastating impact it can have, making sure it's taken seriously and acted on by our governments.

We believe passionately that life doesn't end when dementia begins. We are here for anyone affected by dementia, and we do everything we can to keep people with dementia connected to their lives and the people who matter most.

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Reminiscence

Throughout this book you will find a number of photographs. These have been selected from archives of photographs showing the people and environment of South Staffordshire decades ago.

Photographs, household items, music or personal recordings can be used to reminisce – to remember and talk about things that have happened in the past. This can help strengthen the memory and can help strengthen friendships.

Most people who have been involved in reminiscence say that they both enjoyed the experience of talking and enjoyed listening to others.

You can use the photographs in this book as a starting point to share memories.

Group of children from the Wakefield family, Brewood area

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A couple’s story

M. I was diagnosed with dementia] four weeks ago. I knew that

something was wrong. My wife made reference to the fact I was

forgetting things. I wasn‟t aware I was forgetting things.

My memory was still here. That‟s what matters. So if I have a problem

with modern things, with someone‟s name, that I met last Saturday, and

I can‟t remember their name, I‟ve written it down.

W. He plays the organ. He plays very well and there‟s no problem there

whatsoever. The standard there is the same as it‟s always been, which

is good…but, he has to work very hard at it now and he does a lot more

planning and a lot more organisation to, you know, hold it all together but

he achieves it, so that‟s good. I believe the music automatically flows but

it‟s all the bits round about it that he has difficulties.

M. I‟ve always been used to working and organising.

W. We didn‟t really know the difference between dementia and

Alzheimers.

Factsheet 400 What is dementia?

M. Yes. [My life has altered since I have been diagnosed.]

W. No, you‟re still the same.

M. My own dad died about 75. I haven‟t got many more years. I‟ll try to

make it to my 90s.

W. I can‟t tell you exactly when I first noticed but it‟s been coming on for

some years. My life hasn‟t really altered a lot since I became his carer. I

have to be more careful when we go out anywhere because he does

sort of panic with the times to get back for buses and things. He‟s not

really able to go on buses on his own. It‟s alright if I put him on and he

knows where to get off but it‟s sorting him out. I suppose he‟s not used

to buses. I don‟t drive so I use buses and that helps, but if we go to the

hospital, I can put him on the bus that takes him straight home while I go

and do some shopping.

We haven‟t had help with dementia support apart from we joined the

Kinver group [Dementia Café] a couple of months ago. We‟ve been to

two meetings and that‟s all as far as that goes. We both go to church so

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we meet socially there with various people and I go on a Thursday

afternoon usually to exercise and socialise as well.

I suppose I am still at the learning stage where I have to make myself

remember. This is not him this is the dementia taking over. He just asks

six times when will we be leaving, it‟s not really him.

M. ...not used to it.

W. I felt relieved when he was diagnosed, actually, because it had been

getting worse. There had been one or two incidents where he couldn‟t

remember where I was at all, and he panicked a bit. So it was nice to get

that diagnosis so we could build from there really.

I don‟t really have to look after him much unless we are going out

anywhere although, he can get himself ready and things like that. I have

to cook his meals because he‟s useless. [Laughs]

The other thing he does is, three times a week, on average, goes for a

walk. We live at one end of the village and our daughter lives at the

other so he goes down to my daughter‟s and takes their dog out. A stroll

along the canal, just for a bit of exercise for him and it gives me a

breather and the dog needs a little walk as well.

M. I like walking, taking the dog.

S. Do you think being married a long time has helped now you‟re

diagnosed?

M. Yes. I‟ve been so lucky. I‟ve managed choir and I‟m going to carry on

with the organ. I shall be playing a few services and weddings. I played

my first wedding when I was 16. I was practising yesterday.

So that‟s me done then. I‟ve enjoyed talking to you.

S. Thank you.

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Information Worker/Dementia Café Coordinator

I work for the Alzheimer‟s Society. I am the Information Worker for South

Staffordshire and I am also a Dementia Café coordinator and a

Dementia Friends Champion.

My role in South Staffordshire is to help to raise awareness and

understanding of dementia within local communities. The main ways in

which I do this is through delivering Dementia Friends‟ sessions. This

gives people a clearer understanding of dementia so they understand

what people are going through when they have been diagnosed with the

disease and what it is like to live with it.

There are a whole range of things that can happen when people develop

dementia. Obviously, short term memory loss is one of the things most

people think about, but there are all sorts of other implications of the

disease. People may have problems with not only short term memory,

but with being able to dress and undress, so sequencing things can

sometimes become very difficult. For instance, an individual may find it

difficult to make a cup of tea because they can‟t recall the order in which

it comes, and there are all sorts of implications around that. For

example, an individual whose current memories have them living in the

1950s may place an electric kettle onto a lit gas stove, turn on the gas

but forget to turn it off again or become overwhelmed and confused as

the kitchen isn‟t one they necessarily know how to use

Perception can become difficult, a black mat may appear as a deep

hole, shiny floors may look wet for example and vision can be affected,

so things may look closer or further away. Dementia is a disease of the

brain and the disease affects the way the brain works in different ways.

Every person who has a diagnosis will experience their dementia in

their own unique way. There are some things that everyone has, but

everybody is an individual. It can be difficult to spot, because it is not like

a broken leg or a plaster on your head, it is unseen.

“When you have met one person with dementia, you have met one

person with dementia”

Factsheet 400 What is dementia?

A lot of the time people face problems because those around them don‟t

understand what is going on. Which is the idea of the Information

Worker role; that they get out there and tell people what is going on with

people once they are diagnosed so they can understand. If people are

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supported and understood by their family, friends and communities, then

they are able to stay in their own home and communities for longer.

If people are supported in their community, if neighbours and people in

shops where they go understand what is going on, then they are able to

support them and the person with dementia will feel better about

themselves. They won‟t think that they are alone in this, they will feel

supported and that will make them happier. They are able to stay

independent for longer. In the early and mid- stages of dementia, it is

possible to live really well. There are people in my café who still keep

going with pastimes. For instance, we have one chap who is still a choir

leader, he still plays the organ. The dementia hasn‟t affected his

capacity to do that, so he is able to live well. He remains a vital part of

the community.

I would say to carers and families and friends, and people who have a

diagnosis, to stay with the person, try and understand what is going on

with them and realise they can‟t help what is happening to them. If they

think they are living in 1950, it‟s no use telling them it‟s not 1950 it is

2015. They can‟t understand that; they can‟t live in this world. So the

advice I would give people is live in their world with them, because you

are just stressing the person and yourself if you are trying to correct

them when they are never going to be able to understand. Go with the

person, and keep a fun relationship going. Because that is still there.

People who are living with dementia as carers, are living with dementia

just as much as the person who has the diagnosis, and it is a tough job.

It is difficult to watch the person you love, change and slowly disappear.

It is very important that carers take up as much support as they can and

in South Staffordshire we have support for carers. Seek that help and

advice because it is out there, and the more advice and support you can

get, the better you are able to cope with and help support the person you

are caring for.

I think a lot of people don‟t get a diagnosis because they are scared.

There remains a huge stigma around dementia. I think a lot of people

who are now in their 70s and 80s have this idea of dementia as

something where you go mad and somebody comes and takes you

away and you never see your family again. If that‟s in their head, they

won‟t want to go and see the doctor. In fact, if they do go to their doctors

and get that support right at the beginning, they will be helped to live

longer and in a better way with the disease because they are being

helped to live well with it. It is important that people get a diagnosis and

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the first port of call is to go and see their doctor. I would urge anybody

out there who has got concerns, to bite the bullet and go and see, do

that first step, go and see your GP.

Factsheet 425 How the GP can support a person with dementia

The concerns that tend to send people to the doctor are short term

memory problems. Short term memory loss could be down to all sorts of

other things, however, so your GP is the one who is best placed to find

out what is going on. It could be something quite simple, so it is worth

going to check it out.

There are many types of dementia. Alzheimer‟s is the most common,

vascular dementia next, but then there are more than a hundred types of

dementia. Actually, any disease that affects the brain comes under the

big term of dementia. Often people can be diagnosed with not just the

one type, but several.

Factsheet 401 What is Alzheimer‟s disease?

The Alzheimer‟s Society is the leading charity for dementia, and we plan

to carry on being the best and offering people the best support. I hope

we will be here for many years, because our organisation has a wealth

of information on the website and I think we are the ones that people

often turn to first.

For further information on the Alzheimer‟s Society visit our website.

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Telephone exchange – the Astons, 1964

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A wife’s story

My husband was diagnosed about eight years ago. It starts off by you

noticing that they are losing their memory but to be honest at our age

everyone‟s memory isn‟t at its best! So, you don‟t notice it at first but

then it gradually grows worse and you realise that something is the

matter. I took him to the doctors‟ around his 80th birthday and they sent

us on to someone else who diagnosed Alzheimer‟s.

Over the years, things have progressed and now he needs fulltime care.

He also needs help with going to the toilet and getting washed. He can

dress himself providing that you tell him what to put on next. I don‟t really

have many good night‟s sleep, because in the night there are things that

he needs me to do for him.

Factsheet 502 Continence and using the toilet

Factsheet 510 Dressing

Factsheet 501 Walking about

Booklet Keeping Safe at Home

My husband has trouble remembering steps to simple sequences so I try

and put things in the order that they go in to help him. I don‟t want to

give him too much help because he can continue to be independent to

an extent. He loves to listen to music and we have a sunny conservatory

which he sits in while I do jobs. He loves people and he loves company.

He is now in a wheelchair, which I‟m not very good at pushing, but we

have a very good son who helps out.

It can be quite hard work. You‟ve always got to be thinking of them and

doing something for them. We‟ve always had a wonderful relationship

and he was a very good „do-it-yourselfer‟, there wasn‟t anything he

couldn‟t make. But now he can‟t even put a screw in, which makes me a

bit helpless. It means that we now have to pay for people to come and

do things for us, as before he would have done them himself.

Support groups give you somebody to talk to and you don‟t have to

worry about the person you are caring. Nobody minds if he does the

wrong thing which is very relaxing for me, and I can talk to people going

through the same thing.

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South Staffordshire & Shropshire Healthcare NHS Trust,

Memory and Dementia Services, St George’s Hospital,

Stafford

I‟m a Health Care Support Worker for South Staffordshire, part of the

Memory and Dementia Services in the NHS. Our base is at St George‟s

Hospital in Stafford. I work with both carers and patients, because if you

have someone with dementia, usually they‟ve got a carer; they come as

a package. I support both and that‟s a big part of my job. I help them

depending on what they need, sometimes it is signposting towards other

organisations that can help them long term, or it may be they‟ve been

newly diagnosed so they don‟t know the process, they don‟t know what

the disease is going to be like, what they can do. There are many types

of dementia and some have treatment, some don‟t.

People who have dementia are usually diagnosed by a medic. They

have brain scans, CT scans, blood works, ECG‟s: this all contributes to a

diagnosis, and then they come to us after the diagnosis. They face many

emotions. The first are „Why me, why have I got this, why have I been

picked?‟ that sort of thing. Then, it is disbelief, „Am I going to die?‟ They

don‟t know how they‟re going to live their lives. They panic about how

long they‟ve got, get very anxious, and this can lead to depression.

Those living with dementia and their carers remain with our organisation.

We provide signposts, so if they need a care package we will refer them

to social services. We refer them to people like CASS [Carers‟

Association of South Staffordshire], they may need a Dementia Adviser

(Alzheimer‟s Society), or a solicitor for a lasting power of attorney. These

are all people that they need as well as the medics and nurses. They

might need occupational therapists; we also help them if they need aids

to live in their own home.

Factsheet 445 Talking Therapies (including counselling,

psychotherapy and CBT)

Many people live really well with dementia because basically, they just

need to keep doing what they‟re doing and live well. So eating and

drinking well, try to give up smoking if they smoke, not too much alcohol,

lots of exercise, and lots of rest. Stimulation is very important – keep

doing what they‟re doing, if they go on cruises, keep going on cruises.

Just keep going on with their life.

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Factsheet 511 Eating and drinking

Factsheet 474 Travelling and going on holiday

I advise people not to make any drastic changes too soon because

some people think that they can‟t do this and that but they still can!

People think „Oh, I‟ve got to stop driving‟ but you don‟t know how the

disease is going to progress and there are treatments out there that can

slow the process down: they don‟t cure it – they just slow it down. There

may be drugs available that could also help you live well. But no two

people are ever the same other than their diagnosis.

It can be hard on the carer because there isn‟t always someone around

for them. I support both but technically it‟s the person with dementia

who‟s getting the treatment. Most carers support each other. They can

get support from lots of different places such as CASS, Carers‟ Support,

the Alzheimer‟s Society‟s Dementia Advisers, even family and friends.

Everything helps.

We‟re like any other profession, there‟s only so much we can do, they

have to want to do it themselves, they have to move on and not give up

because they‟ve still got lives to lead.

For more information on the dementia services we provide see our

website

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A granddaughter’s story My grandfather had dementia, but he and my grandmother together had

successfully hidden it until my grandmother died quite suddenly. Almost

overnight, my grandfather‟s dementia became fairly obvious.

Unfortunately, we needed to put him into a residential care home that

they had chosen when my grandmother was still alive. They had decided

that when one would go the other would go into this residential home. I

watched his deterioration in there but, sadly, he was in a place that didn‟t

really know how to look after him.

Factsheet 476 Selecting a care home

My grandfather was the type of guy who always wore a shirt and tie, and

he took the tie off when gardening, he would still garden in his shirt and

the tie would go back on as soon as he came in. He was always very

smart. We went to visit him one day and he was in a red sweatshirt and

grey tracksuit bottoms, I don‟t think he had ever owned a sweatshirt in

his life, and there was that sense that not only was he beginning to lose

himself but people weren‟t caring for that part of him, they hadn‟t

understood who he was.

It was difficult to see how that had affected him and how much was his

deterioration. He was in his 90s at that point, and he and my

grandmother had been together for 60 odd years. It was difficult to know

what of his deterioration was affected by that loss and what wasn‟t; but

he wasn‟t happy, we knew he wasn‟t happy. Various other things meant

that in the end we moved him and the place that he went to next was

just incredible.

With dementia you get this sense that there are clouds there, but

sometimes there‟s blue sky, where you have almost regained yourself,

especially who you are. They took advantage of those times, and

through us, to really get to know who he was. They got to know what

football team he had supported all his life and the male carers would

come and talk to him about football. They took him down to the pub (he

hadn‟t used to go to the pub, but he started to), and things like that, they

took that time and did things like that and how he dressed and all the

things that were important to him became part of him again.

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Age UK South Staffordshire

Age UK, South Staffordshire is a leading charity helping older people in

later life. We work with people who have complex needs like dementia

as well as in the community helping older people live more

independently.

Dementia affects everybody completely randomly, because it‟s all part of

the diseases of the brain. Confusion and memory loss are the most

common, and they can get frustrated and upset if they suddenly don‟t

know where they are.

People with dementia face isolation. They face a lack of understanding

because family members don‟t know what to do or when to do things,

and frustration because people may not understand them. They face not

being able to access certain activities in the community. Some people

don‟t feel comfortable with people who have dementia because they

don‟t know how to behave.

If all family members, and people in their community have dementia

awareness, the person with dementia will live better. A healthy diet

helps, going regularly to activities in the community helps, and being

happy in yourself. If people are happy, they tend to live a little bit longer

and happier. We provide day care, so people travel to a centre on a mini

bus and spend the day with us. It also gives their carers some free time.

Factsheet 524 Understanding and supporting a person with

dementia

My friend has an aunt in a care home. She‟s about 82, but she believes

that she is a 20-year-old supermodel. The aunt is in a care home for

dementia and complex needs, but, every day she dresses up, has a big

smile of her face and she walks up and down doing fashion shows for

everybody. The people in the care home have encouraged that because

they know it‟s what makes her happy. If the staff were to turn around and

say „Oh no, we don‟t want you to do that‟, it would make her upset and

sad. Care is about developing individual people‟s interests about what

they want at that time.

I would advise people who are diagnosed to go on a dementia

awareness session like those provided by Dementia Friends. Get as

much information as possible on support within the community and try to

explain to family and friends what‟s going on, especially children. My

grandad‟s got vascular dementia and my children know about it because

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I have told them. They are aware and know what to expect. Family need

to access support immediately and they need to know what type of

dementia someone has got to get the best support available.

Dementia has got a stigma attached to it…it‟s hard, people don‟t want to

know they have got dementia. However, doctors nowadays are very

good. People are getting diagnosed earlier on and there‟s a lot of

research going into it. So if you can explain positive ways of living with

dementia, that stigma wouldn‟t be as attached and people could accept

it better, to move on. Also, it may not be dementia. There are a lot of

symptoms out there that mirror dementia so it is important to go to a GP

and get diagnosed.

Factsheet 425 How a GP can support a person with dementia

For more information about Age UK see our website

Forget-Me-Not Club hut on fire, 1968

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A wife’s story I care for my husband, who was diagnosed in January 2011. He started

to get quite nasty with people. Initially, I noticed that he wouldn‟t go

anywhere.

Factsheet 509 Dementia and aggressive behaviour

It was very daunting because you know what the end is going to be but

you‟ve got to go through that.

I would advise someone whose partner or mum or dad had just been

diagnosed with dementia to go to support groups, you see the different

stages. And get into a routine.

He lives in a care home now.

Aubrey Philpott, Oakfield House, Lane Green Road, 1942

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A daughter’s story My father was diagnosed last Christmas (2014), but it has been

developing very quickly. He had gone on holiday with his lady friend and

couldn‟t sleep. Looking back, I think this was one of the first signs

because he couldn‟t adapt to change.

Dad doesn‟t sleep at all some nights now, so I‟m up with him. He also

has hallucinations so he sees people on the roof and in the house which

can be quite frustrating for him because no one else can see them. He

can‟t be left on his own.

Factsheet 527 Sight, perception and hallucinations in dementia

Support groups for people living with dementia are fantastic. Everyone is

in a similar situation as you and they can relate to what you talk about. It

gets Dad out of the house as well, which is good because it keeps his

brain active and, most of the time, help him sleep better.

He is my dad and won‟t be here forever so the time I get to spend with

him is very special.

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Stroke Association

The Stroke Association is a national charity supporting stroke survivors

and their carers, and provides services for both. They work with people

who have long term medical conditions which can be anything from

diabetes to heart attacks and strokes. They point people in the direction

of services that can help them.

Strokes can lead to dementia, but you can prevent a stroke by eating

healthily and exercising. Strokes can affect people in different ways.

Some people can completely recover whereas others can be completely

paralysed and never get their speech back.

Their website can be used to find local stroke support groups, and they

have a national helpline which is on 0303 3033 100.

Further information on the Stroke Association can be found on their

website.

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A wife’s story My husband was diagnosed in February this year [2015] it was

confirmed by a doctor in a hospital. They had to do different tests to see

what dementia he has. There‟s no definite progression of the illness,

unfortunately, so there‟s no certain dates, like a three-month time period,

to prepare you for what will happen.

Factsheet 458 The progression of Alzheimer‟s disease and other

dementias

My husband was a very active man, he built furniture, garden furniture;

just anything, you name it! I wasn‟t aware of any real changes straight

away, because my husband has COPD, which is obstructive airways.

They weren‟t sure if it was because he didn‟t have enough oxygen that

he wasn‟t sure what he was doing.

He forgets things. He‟ll go „What have I got for dinner?‟ and you will tell

him and in an hour he‟ll have forgotten so then he‟ll repeat what he said.

To avoid that I come up with this idea that if I wrote a menu, I have to

keep to it and can‟t change it. I write a menu every day for all meals from

morning until supper time. He doesn‟t have to ask me because he can

just look for himself. The only problem with that is that if something crops

up and if you have to change something then it‟s a problem because he

will say „Where‟s my liver and onions?‟ He‟ll forget things have had to

change.

Factsheet 511 Eating and drinking

The first time I noticed his forgetfulness was when I took him into B&Q

one day, and I said to him, because he can‟t walk about, „Stop there, sit

on that pallet, and I‟ll come back to you‟ and when I came back he

wasn‟t there. So I had to get the girls on the tannoy to keep calling his

name, and eventually I got to him.

It‟s very hard sometimes, but then it‟s harder for him because he knows

now that there are things he can‟t do. He can‟t go out on his own, he

can‟t drive... I soon realised that he was unable to do many things. It‟s

hard because when they become housebound, you become

housebound.

Factsheet 444 Apathym anxiety and depression

Nobody tells you what it‟s going to be like. They tell you „He‟s got the

starting of Alzheimer‟s‟ but they don‟t tell you what will happen or how to

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cope. He puts odd socks and shoes on. He forgets people‟s birthdays

but he doesn‟t forget names. Some people will come to the house and

he says „What do they want?‟ and he‟ll tell them not to come to the

house again. For a while I stopped leaving the house, stopped visiting

the family. You begin to put yourself on the back burner.

Factsheet 523 Carers: Looking after yourself

I am lucky because now I keep my mind occupied by doing my own

hobbies. When I go out I know that he‟s going to be in bed asleep. My

son came up with the idea to get him an old cat that somebody was

giving way. It‟s good because the cat keeps his mind occupied, it makes

him forget that he has dementia.

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South Staffordshire & Shropshire Healthcare NHS Foundation Trust Arts for Health Project South Staffordshire and Shropshire Healthcare NHS Foundation Trust‟s

Arts for Health Project works with artists in visual arts, performing arts

and music, bringing these onto the wards in hospitals in South

Staffordshire and Shropshire, as well as into the community.

Arts for Health is a new project which has been developing over the past

few years. All of their programmes cater for people with various types of

dementia and they use it as a connectivity programme so that carers can

meet up and discuss issues with each other in a supportive environment.

Among other activities, they do creative song and dance with

professional dancers and singers. Dance can help improve the mood of

someone living with dementia, whether as a patient or a carer, as they

can get down occasionally. The programme also allows family members

to join in and provides the opportunity for them to remember their

relative as they used to be because music is so evocative.

Service users may not be able to remember everything about their life

but as soon as the music comes on, project workers watch their faces

light up as they start telling stories to family members. The music

stimulates their memories. Art for Health play a lot of music from the era

of the Second World War because even though some of the participants

are only sixty; this music is recognised by a lot of people. They also play

Elvis and the Beatles.

There is a lot of participation and everyone gets involved. It provides

respite for carers and reduces the isolation that can come with dementia.

When people dance they become a different person because it lifts their

mood immediately.

Some patients are partly immobile but they are able to do upper body

movements. Taking part in the dance strengthens their upper body,

which in turn helps with balance and may help prevent falls.

People who are new to the programme sometimes find it stressful

because it is an environment that they are not used to, so routine, habit

and perseverance can be key.

Arts for Health opens eyes, and provides opportunities to prevent people

feeling they are trapped by dementia.

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For more information on this project see our website

Thomas William Jones – Cobbler

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A son’s story My father was diagnosed about three years ago now. At first, we noticed

he couldn‟t remember things, and kept asking us to repeat questions.

We went to the doctors where we are and there‟s what they call a

memory clinic that meets once a month and specialises in dementia.

They have your parents, or whoever it is that has dementia, go in and

they run tests. The patient gets given something like a questionnaire. It

is a simple thing for us to complete, but for someone who is struggling

with their memory it is difficult. The clinic analyses where the person with

dementia is one year and then they look at the next year to assess and

analyse what degree of dementia they have, because not every has

dementia at the same rate, and some people with dementia can still

cope.

Factsheet 426 Assessment and diagnosis

Factsheet 402 What is vascular dementia?

I‟m always confused about Alzheimer‟s. Dad has vascular dementia and

what‟s that? It sounds like the veins, the blood and it is to do with the

blood as he has very poor circulation. The clinic and surgery give you

loads and loads of information to read. I hate reading, but you go to

places that hold support sessions for people with and looking after

people living with dementia, and you can talk amongst yourselves. You

mention something and „Oh I remember that, try this‟, you don‟t feel

awkward or an idiot or feel like you are being preached to because you

have just asked a question. Everyone‟s in the same boat.

When Dad got diagnosed with dementia, it was like you are the adult

now and he‟s the kid. You never expect it to happen. It‟s my turn to look

after him. I don‟t really think about it, I just do what I have to do, get on

and do it. I have to do everything for him now. He can‟t do much

himself. I‟m a full time carer. I‟ve been back nine years. I used to go

back at weekends, then I sold my place and moved up. Three years ago

I stopped work because I couldn‟t leave him on his own.

Factsheet 523 Carers: Looking after yourself

Support networks are important. It‟s supportive being with people who

are in the same situation as you. Sometimes if you‟re talking with people

don‟t understand dementia you feel you are troubling them. There are

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some good things that you only find out because you go to support

groups.

My dad is 91 so he is doing well for himself. We lost my mum when she

was only 79, which is no age really. My dad coped for a bit, but he was

never the one to do anything in the house because Mum did everything

for him, so when he retired from work that was it. He was a

schoolteacher, a deputy head. Dad was a typical guy and did woodwork,

he was smart, he went to university, so he had it all up there and then it

all went with the dementia. We get through each year and gradually I

see a decrease. I do what I can so he can stay in his own house. We

have had lots of things done to the house.

I put in a stair railing for him because he can‟t manage the stairs and I

was going to start putting other things in for him as well, but then I was

told the NHS Intervention Services would come along and assess your

house and fit things. It is on the condition that if anything happened later

on you would let them know and they could then re-service things. That

was really good.

Booklet Making your home dementia friendly

Booklet Keeping safe at home

Another thing I found is that there are little things that they [people with

dementia] worry about. For us it is an everyday thing, we don‟t think

about it, but a typical thing was the TV magazine. I get Dad the paper

every week with the magazine in it and he has the clock on the wall, but

he can‟t always remember what day it is and there was no way he could

find out. He has the magazine but unless he turns to the right page he

wouldn‟t know what day it is. So I have put a noticeboard (the big strip of

cardboard on the back of Muller corners) in the kitchen, and I write on

there all the days of the week and on a smaller box I write the numbers

and then I put the months on. I put the day on it with the new date on the

board every morning. Dad goes past the board every day to go to the

toilet so he can just walk up and check what day it is. It‟s a simple thing

and doesn‟t cost a bean, because it is what you would throw away at the

end of the day, but for my dad it is huge.

Imagine if you were sitting day in and day out, but you don‟t know what

day it was. It must be horrible and you don‟t want to keep asking all the

time and there was no way he could find out. He‟ll watch a programme

on television and he‟ll miss something because he thought it was

Monday but it‟s Tuesday. Dad got all mixed up, whereas now, he doesn‟t

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get mixed up. He goes to that board as many times as he wants, and

walking to the loo he can double check, yes it is Monday, and he‟s

alright with his telly. It‟s little things like that.

I‟ve also installed a CCTV at home. Dad opens the door to people so

what I have done is I have installed one at the top of the stairs so if he

goes to the front door I get an alert on my phone, an email, to tell me he

has done that and I can assess what is going on. I can hear as well with

the microphone. I have one in the kitchen for the back door. I have this

back up so I can be home in 20 minutes to sort out any problems. It‟s not

safe him to be opening doors. Now I can see what‟s happening, and it

enables me to get out because I can‟t be at home all the time.

Dad also has a safety pendant and he presses that if he falls to the floor

and can‟t get up. It is a mobile and I have sorted it so I can talk to him

through the telephone system. I have done all these things and found

others from talking to people. I have doctored ideas, because it is so

easy these days with wifi. It gives me a break. I‟ve got things in place

just in case anything happens, so I still get a bit of freedom.

Codsall Secondary School class group - 1950

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Staffordshire Archives and Heritage Service Staffordshire Archive and Heritage Service hold the historical records for

the county. We hold documents at Staffordshire and Lichfield Record

Offices, Stoke on Trent City Archives and in all of the libraries. We have

over a thousand years of history that people can come in and use to

research about their family, events, or the place they live. They can use

it for study purposes or personal interest.

We also have a County Museum Service that holds over 40,000

photographs and 27,000 objects all related to the history of

Staffordshire. Their main base is at the National Trust‟s Shugborough

Estate and their collections are displayed in the servants‟ quarters. They

contain details about the rural and community life in Staffordshire.

We operate three public search rooms for the Archive Service so people

book to come in to research their family history and we can also offer

them advice on how to start the process. We work with people of all

ages from school children all the way through to working people and

older and retired people. People 55 and older are our biggest user group

and we work with a number of organisations.

We also do oral history projects; we have interviewed people to collect

their memories. The most recent one we did was about evacuees during

World War II. We knew that if we didn‟t talk to people who had been

evacuated to Staffordshire during this period soon, they wouldn‟t be here

any longer, and we don‟t have many records about what happened to

evacuees around the county. So we had a big promotion around the

county and in Kent, as a lot of the evacuees came from there. We got in

touch with the people who responded, interviewed and recorded them,

transcribed their stories and have kept these in our archives. Their

memories went into a book called „Children on the Move‟.

We are looking to do more of these projects in the future by changing

our service to centralise in Stafford and free up staff. We want to engage

with people - particularly those who may have the early stages of

dementia. We find they can remember clearly events from sixty or fifty

years ago even if not what happened yesterday. There are objects in our

collections that provide a starting point, and allow them to speak about

the past in a positive way.

Another service we offer is called Museum on the Move. It‟s an

exhibition on wheels. The mobile museum visits lots of care homes,

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specifically where people have dementia, and we have Reminiscence

Boxes that we loan out to libraries, to help people with dementia. It is a

popular service for them, and they are keen for us to continue. We take

the museum to them, so they don‟t have to go on a long journey. They

look at objects they remember from their childhood or early adult life and

talk about it. It enables them to engage with people, not remain sitting in

their own world.

Memory makes you feel connected with where you live and your family;

that‟s really important. Perhaps when your other memories are going, it

means you are still connected to people here and now. It is a way of

connecting the younger generation with the older generation; a way of

understanding.

Our e-mail address: Staffordshire.record.office@staffordshire.gov.uk

Our website

Aerial view Bilbrook Manor

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A mother and daughter’s story (mother has dementia)

Mum

When I‟m at home I have nothing to do. Luckily my children come to visit

me every day, M does everything for me, she does all my work and

she‟s my second child. My other children visit now and again; some

don‟t visit at all. My one son lives far away and he comes once every

three weeks. But I get bored when they‟re not there because I have no

hobbies, I used to enjoy walking but I can‟t anymore, I have back trouble

and I find it depressing.

Factsheet 529 Exercise and physical activity

Factsheet 444 Apathy, anxiety and depression

Factsheet 458 The progression of Alzheimer‟s disease and other

dementias

I‟ve had dementia for four years. It‟s Alzheimer‟s; I‟ve become forgetful

and repetitive.

My daughter handles everything for me, the little bit of money I have and

her husband comes in and sits with me, and she baths me. I don‟t do

anything; all I do is clean myself. M is the one who talks to the doctor;

she‟s the one who knows how I am. I watch the TV but I don‟t

understand it.

Factsheet 504 Washing and bathing

Factsheet 413 Benefits

Factsheet 467 Lasting power of attorney

Daughter

My mum had a bank card but she‟d buy something and ask for cash

back but leave the money there, sometimes fifty pounds! So I‟ve had to

take her card now and get the money out for her and do the shopping.

She doesn‟t have any money like notes in her house, they‟re all pound

coins because when she goes to the shop she keeps losing her purse,

she‟ll just put it down and no one hands it in. I‟ve had to cut a key and

attach it to her trolley because she kept losing that too.

Factsheet 484 Making decisions and managing difficult situations

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I‟ve got an app that shows me exactly where my mum is, so if she walks

about, I know where she is. I found the app on the internet. It‟s called

Weenect. I put the little device in the bottom of her bag in a waterproof

case and it costs around £70 [at time of writing], but I can‟t take it out

because if she knows something‟s in her bag, she might take it out.

Factsheet 437 Assistive technology – devices to help with

everyday living

I used to work at least three days a week, but now I work one.

Mum

She does everything for me.

Daughter

Mum likes her Irish music because it makes her remember again. She‟s

a lovely lady.

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Jackson Perry Legal Services Ltd I am a solicitor that has specialised in working with clients with dementia

for 15 years. I do a lot of drop-ins, and social evenings with dementia

groups, and give talks to carers support groups.

A judgement has to be made as to whether someone has the mental

capacity to prepare a legal document. If they don‟t have the capability

then I have to tell them, or their family because they are usually the ones

who made the call. I say to the family that they don‟t have enough

capability and we look down the route for a protection application. This

then allows for a nominated person to make decisions in the best

interests of the person with dementia.

Factsheet 460 Mental Capacity Act

Factsheet 472 Lasting Power of Attorney

It‟s difficult for me to tell a person with dementia they don‟t have the

mental capacity to prepare a legal document. That‟s difficult, but you

have to do it, it‟s one of those you just have to accept even if they don‟t

like it they have to accept it. You‟ve usually got a family member with

them so it could be the husband and wife talking about wills or lasting

powers of attorney and you perhaps say „I‟m quite happy to do a lasting

power of attorney for you but sadly you don‟t fit the criteria [because they

don‟t have sufficient mental capacity] for it, therefore we‟ll have to look at

other ways we can do it‟.

For anyone living with dementia, I advise them to keep going out and

experience everything that‟s available. Use all the resources, don‟t sit at

home in silence and worry about it, get out there and talk about it, speak

to social services because it will relieve the stress a bit. When they‟re

the person who‟s got dementia, if they go along to a music group and

enjoy listening to music, it takes the pressure off the person who‟s caring

for them. They are open to people in the same boat, they‟re sharing

experiences. Don‟t feel like you‟re isolated at home. The one thing not to

do is isolate yourself.

Note: Alzheimer‟s Society advises people to get their future financial

wishes and planning out of the way before mental capacity comes in to

question.

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Beating the Bounds

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A daughter’s story

About two years before the diagnosis, Mum was becoming more

eccentric and her overall behaviour changed. She started getting

muddled up with things. For example, she went shopping every week

but it started to take longer to get out of the house because we had to

check and double check that she had her keys, shopping bags and

she‟d locked the door. There were also lots of things that we knew

nothing about because she lived on her own and she was very secretive

about her problems. Often families don‟t know how bad it is until they get

round to checking up on things such as bank accounts and post that

they assume would have been sorted. You can go from suspecting that

something is sort of wrong to things being really wrong very quickly.

Factsheet 525 Changes in behaviour

You go from being the child to being the parent of your own mother. If

you imagine trying to tell your own parents what to do, it‟s totally alien

and they start to question what you‟re doing. You feel like you‟re

questioning their authority because as far as they‟re concerned they‟re

fine, and everybody else is wrong. So if you tried to tell her that

something was wrong, she‟d think that everything was fine.

The difference between someone with dementia forgetting something

and someone without dementia forgetting something is that it doesn‟t

matter to us but it really matters to them. My mum dealt with dementia by

becoming delusional and she created a whole imaginary world in which

she was in charge. The carers came in to see her every day and they

were like her servants. It grew and grew until it became quite serious,

but that was her way of dealing with it.

Factsheet 526 Coping with memory loss

If you talk about dementia to people who don‟t have any experience, like

something happened that is quite funny to you, they don‟t know how to

react. If you go to a dementia support group, everyone is going through

the same thing so they understand what you‟re going through and you

feel like you can talk about anything with them. It also helps you realise

that you‟re not the only person in the world going through this.

She went through a stage for around three years where she was acting

like a three-year-old, so she was extremely loving and very affectionate.

She had teddy bears that she talked to and she thought that they talked

back to her, and she also called me „Mummy‟. So to go through that time

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with her was extremely special and we became closer than ever. If she

hadn‟t been diagnosed with dementia, our lives would have been totally

different and I would have missed this special opportunity which

dementia has given us. For someone to put their utmost trust in you is a

special gift.

Factsheet 527 Sight, perception and hallucinations in dementia

She is in a care home now, but I go and see her three times a week. I try

to take things that stimulate her such as children‟s books because she

likes colourful pictures and ones that have rhymes in, which helps with

her attention. I made a big sensory blanket with loads of different

textures because she likes to feel things, and it‟s a way of

communicating because she can‟t talk now. If I get a reaction from her;

that‟s communicating. Everyone‟s dementia journey is different, so

although you can read books about the first, second and third stage and

you can relate to what they are saying, you learn along the way what

works for you.

Factsheet 476 Selecting a care home

When she was first diagnosed, I was busy trying to control something

that I couldn‟t control because I lived so far away and I couldn‟t see what

she was doing. It was so stressful for the first 18 months because I was

constantly exhausted, and afraid all the time what was going to happen

to her. But when she went into the care home I knew she was safe, and I

felt really relieved. And then it hit me that she had dementia, and I

started getting upset because I had been too busy to take it all in.

Factsheet 507 Grief, loss and bereavement

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Volunteer at the Living Well with Dementia Café CASS (Carers’ Association of South Staffordshire)

I have been volunteering at the Carers‟ Café for four years. I was a

trustee for the charity for a long time and a board member, but I prefer

being a volunteer because you are hands on and feel like you‟re making

a difference to people‟s lives. You‟re helping that happen.

My typical day as a volunteer starts when I arrive about an hour before

the café is due to start to set up the tables and make sure it‟s ready, put

out leaflets etc. But most importantly get the kettle boiled for the teas

and coffees! I usually then sit on the desk, welcome people, write name

badges, and ask if they want to join us for lunch.

It‟s a really good job because you‟re the first face people see and when

new people join us they‟re usually scared and worried about coming in.

We help them by introducing them to others so they can sit with

someone and not be alone. Then, during the course of the day,

volunteers make drinks, do the endless washing up and clear up the

room at the end. But in between that I talk to the people that come in

and that is the best part. When I come to the café, it‟s to support the

carers but most of them bring the person they care for with them, so

there are a number of people with dementia who come as well.

As well as this, I am a carer for my dad, who has vascular dementia. It

came on very gradually but he is fortunate because he has so far stayed

at home. I am a part time carer because I don‟t live with them but I go in

every day to sort things out.

I first noticed something was wrong because he‟d always been out and

about and very active, and then he didn‟t seem to be able to find his way

to places. Getting him to stop driving, therefore, was a big issue but

important, because he was getting confused. Then he lost his very short

term memory so he‟d say „What are we doing now?‟ then two minutes

later he‟d say „So, are we going out?‟

Factsheet 439 Driving and dementia

When my dad was diagnosed in Wolverhampton, my parents went to an

Alzheimer‟s Café where they got information about the disease and

where to go to get help. They got to know other people and groups.

When they used to go to these groups, my mother would come back

with handouts and leaflets which were very helpful. Then I started

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volunteering here. I didn‟t want to volunteer at the one they went to,

because they won‟t be going one day and that would be difficult. So I

found out about here. CASS has a number of these cafes.

More information about CASS can be found on our website

Ring view at Brewood Show

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A wife’s story

My husband was first diagnosed about five years ago. He was 55 when

he was diagnosed but I think dementia started he was about 53. He was

diagnosed with Alzheimer‟s but there has also been talk of a tumour.

Factsheet 440 What is young-onset dementia?

To start with, I noticed that he was forgetting things and this became

worse and worse, and he was also having problems at work. In the end,

he lost his job because he just couldn‟t do it anymore. He used to be an

upholsterer.

It was upsetting when he was diagnosed, even though I knew, if I‟m

honest. I knew in my mind that it was dementia because I worked with

dementia. But when they actually tell you, it‟s like a lorry‟s hit you. It‟s so

upsetting you can‟t believe it‟s that, and that it‟s now my problem as well,

I suppose.

My life has altered in so many ways. Like I say, I was working in care

three nights a week and I have had to give work up, that‟s a big change.

Things like going away on holiday, unless I go with the family, I couldn‟t

take my husband on holiday, just the two of us - it would be too much.

Everyday life itself changes. Lack of sleep, my husband doesn‟t always

sleep, sometimes he can be up three or four times a night and you get

tired after walking around all day. It changes everything.

Factsheet 474 Travelling and going on holiday

If I were to give advice to someone who was thinking about going to go

to the doctors regarding memory loss, I would say „Don‟t hesitate. Just

do it. Go ahead.‟ It‟s very hard because you want to put it off, you think

this can‟t be happening to us, especially because my husband was so

young really. A lot of people might be in their seventies or even their

eighties, rather than in their fifties. You do want to stump that, but you

can‟t, you have to face it.

It means everything to me to have somewhere to go [support group],

where people are in the same situation, it really does. It‟s the mix of

people, going through the same kind of things. Like my husband, he

won‟t always sit down, he has this thing with his hand. No one takes any

notice, they understand that it‟s dementia. So it‟s everything. It‟s a lifeline

really.

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Shepherd and his dog, Brewood Park Farm, Coven

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Carewatch

Carewatch delivers care to patients in their own homes. They look after

people with mental and physical health issues, as well as dementia.

They do household jobs and help with personal care.

A lot of their clients with dementia are confused about what they have to

do each day from waking up in the morning to going to bed at night.

They don‟t recognise loved ones or carers that they see most days.

Carewatch give them their medication and help them with going to the

toilet and if clients struggle with anything around the house, they offer

support.

„People feel like their life has stopped but it doesn‟t and you can still

carry on living a happy life. You need to stay positive and loved ones

need to reassure you and provide support on bad days. It is also about

giving the carers support because it can be hard and if they need

support, they need to get it!

„Let the person living with dementia maintain their independence, as just

because you have dementia, doesn‟t mean you are incapable of doing

the things you used to be able to do. Support the person living with

dementia by talking them through what they need to do, for example,

when making a cup of tea and don‟t getting frustrated when they get

things wrong because it really doesn‟t matter.

„I love hearing our clients‟ stories as some are amazing, and knowing

that you have made a difference in their day because when you leave

they are grateful and so lovely.

„Some people feel like they don‟t need care so you feel slightly intrusive

but then you build that relationship up and eventually you make a great

team. You can be so happy when they see you and they‟re happy. You

can feel sad when you leave them because you know how much they

enjoy seeing you. It is nice that people are in their homes because they

still have choices and independence.‟

More information on Carewatch can be found on our website.

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A husband’s story

My wife was an orthopaedic nurse at the Woodlands Hospital in

Birmingham where they did the first hip transplants or hip replacement.

She was always very active and we played golf together. Then she was

finding that she was getting out of breath or weary before she finished a

round of golf.

She went to the doctor and he thought she had angina, so we went to

the hospital to have some tests and saw a cardiologist and he said, „I‟m

not convinced, you‟ve got a heart problem. Have you had any tests done

lately?‟ They did a blood test and found out that she had leukaemia.

Acute myeloid leukaemia. She was on chemotherapy for nine years. She

has been in remission from the leukaemia for the last two years.

During this period, she found a lump in her right breast and found she

had breast cancer with which she had a right side mastectomy. We think

that the years of chemotherapy developed vascular dementia. Vascular

dementia is where the blood supply to the brain is restricted, and causes

confusion and memory loss.

She was diagnosed with dementia about three years ago. She was very

active in various things and she was treasurer of many organisations

and then suddenly, she couldn‟t add up, didn‟t know the denominations

of the currency. So she went to Cannock hospital and had an MRI and

that is when they discovered that she had vascular dementia.

Factsheet 402 What is vascular dementia?

She has deteriorated since she has been diagnosed with dementia, kind

of like going down steps. You would be okay and then you would go

down to another level. We‟ve been married 62 years, I‟ve known her

since we were fourteen, so it is difficult.

A typical day with my wife starts when I have to get her dressed,

because she doesn‟t put her clothes on in the right order. I also have to

help to wash, get her breakfast and lunch and her main meal in the

evening and put her to bed.

Factsheet 510 Dressing

She goes to day care at Wombourne on a Wednesday through Age UK -

they also offer a lot of support and we have got three daughters who are

very helpful.

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Home Instead

Home Instead are providers of dementia care services. We help carers

and people living with dementia with everyday life and jobs around the

house. We also provide companionship, and that can be in the form of

taking somebody to the doctors or hospital appointments, we could be

taking them to groups such as those run by the Alzheimer Society. We

also provide home help, which is housekeeping or preparation, or

shopping. We give a full service. If carers want to go away for a week‟s

holiday, we can step in and look after Mum or Dad for them.

For somebody who‟s got dementia, familiarity is really important. They

may never remember your name but they will get to know you if you are

the same person who goes in to them all of the time. They will know you

are not going to do any harm; they feel safe with you. And, from a

carer‟s point of view they get to know that client very well. It can take a

long time to build that trust. Imagine if you couldn‟t remember why

somebody is coming in at eight o‟clock in the morning, every time

somebody walks in that door, it is a stranger to you. So if a stranger tells

you need to take your clothes off and get into the shower, what are you

going to do?

Another thing that is really important is time - we arrive at the same time

each time and if we say we will be there within the hour we are. To

somebody with dementia who may be taking medication, if they don‟t

take it on time it could make the situation worse for them. So we have to

make sure we get there on time.

We build trust through continuity and regular reviews. What do you think

is going to help, what are the triggers? What‟s going to cause that

person to be obsessed? Step by step looking at how we can improve the

situation, things we need to change.

Depending on the individual, some people will straight away accept a

carer. Men can be difficult because if you look at the age group we are

caring for, it‟s an age where often the wife didn‟t work and the man was

the head of the house. It‟s their role in life, so if you have a husband and

wife situation where perhaps the wife‟s got dementia, it can be tricky as

the man may not want to admit that he needs help to look after her.

A lot of the time we work in the home. We write things up on a

whiteboard and leave our photographs there so that they can familiarise

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themselves with our faces. They may not be quite sure if we put the

soup in at eight o‟clock so we put that up on the whiteboard. It‟s about

reminders, while letting them do as much as they can for themselves.

It is really important with a person who has dementia that you allow time

to talk them through tasks, for example brushing their teeth. Picking up

the toothbrush, have them standing in front of you and say, „Let‟s brush

our teeth Alice, let‟s put the toothpaste on…‟ It is those prompts of things

that they can‟t recall that makes the difference. Making a cup of tea, it‟s

the sequence, boil the kettle, put the teabag in, put the milk in, don‟t put

the teabag in the kettle… Understanding what is happening, but allowing

them to do things with prompts, reminders, encouragement. And that is

where you need the time to do that. If you do for them, they‟re going to

lose the ability to do it themselves.

A lot of the time people ask for help with cleaning the house. It‟s

probably something that has been forgotten and they still have the ability

to get around so it is more about encouragement, „I‟m polishing now, are

you going to help me?‟ It isn‟t that they want you to do it for them it is

that they don‟t remember that it needs doing.

Everybody is individual which is really important to recognise because

there are so many different types of dementia affecting people in

different ways. What a lot of people don‟t understand about dementia is

that they are usually on a journey backwards in time. A lot of conflict can

happen with a person with dementia if a carer doesn‟t understand that

and one of the most common is, „I‟m going off to see my mum‟. „Well,

Mum died 20 years ago don‟t be so silly‟. To a person with dementia,

that‟s now.

Some people living with dementia may not have gone out for a long

time, so need to be slowly integrated back them into the community.

We‟re constantly looking for local events that may be appropriate, so

that we can take our clients out and they can integrate on their own

level. You tend to find being social with dementia can be quite difficult as

people know there‟s something wrong but not what. They will remember

that they used to be able to play bridge but when they go to play it, they

find they can‟t remember how and that is an awful stage. The next stage,

although much worse for family members, is actually better for the client

with reintegrating because they are not trying to hide the fact that they

can‟t play bridge or knit anymore. That stage is easier to find them things

that they can do, at the skill level they can manage.

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People living with dementia have gone from having an independent life

to thinking „Somebody is going to put me into one of those homes that I

have heard about that are really terrible. Somebody is going to come up

and hurt me and I‟m not even going to know they have hurt me because

I‟m not sure.‟ That‟s why, things are changing and being regulated

across the board.

More information on Home Instead can be found on our website.

Codsall Wartime Fire Service

Page | 49

A daughter’s story

We know my mum has vascular dementia but she doesn‟t have a

diagnosis. She refuses to go to the Memory Clinic, because she refuses

to have them tell her what she already knows. We know this, because

she had a mini stroke and we took her to A&E, where she had an MRI

scan, and the MRI scan gave evidence of brain disease. They said that

she had to go to her GP and then to the Memory Clinic. But she refuses

to go. And we can‟t make her.

Factsheet 402 What is vascular dementia?

I am a part time carer. Fortunately, my dad is very fit and healthy and he

does the main care. But myself, my brothers and my two sisters in law

take in turns to give him time off. The thing that really hit me was my dad

said to me about two months ago, „I‟m no longer her husband, I‟m only

her carer.‟ He has lost his partner, she‟s still there, but he has lost that

relationship he had with her and he is now having to form another

relationship as a carer with her.

My dad‟s very good, he‟s a very positive person and we all are as a

family. There is still a lot of my mum there, left, so we cling on to that. So

we are all, even my mum, able to laugh at the things that she does. So I

think that is a huge leveller, so humour is very good. She‟ll try to tell us a

story and she‟ll start it five or six times and she can‟t find the words, so

we all laugh, we move on to something else.

Factsheet 500 Communicating

It is difficult but there are moments when my mum is still there. She‟s still

my mum. And she does still have a sense of humour. And there is still

the caring side of her there, because she‟s never worked, she‟s always

been a full time mum and those urges are still there and when we visit

she recognises that we need feeding, you know, she‟ll say „Have you

eaten?‟ and I‟ll say „Yes‟, and after about the tenth time of asking the

same thing, we‟ll move on to something else. But it‟s always another

caring thing like „How‟s…‟, and she can‟t remember my daughter‟s name

so we have to go through that. „Her name is Lucy.‟ ‟Oh yes, how‟s Lucy?‟

So, you know, the caring side of my mum is still there very much. She‟s

bothered about what‟s happening to us all even when she can‟t

remember our names or often how we‟re related.

She‟s still very sweet, in fact her personality has changed a lot because

she was the matriarch in our family. She was always the strong one, the

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very vocal one, the one who said how it was going to be, how my mum

said it was going to be was how it was going to be, even my dad, and

but now she has become very introvert and she just wants to smile and

hold your hand and we have to watch the same film over and over again.

I know The 39 Steps, off by heart and I also know Miss Potter, about

Beatrix Potter, really well. So she has become quite a sweet old lady,

really.

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Revd Rachel Dale, Rector - The Watershed Benefice

When I was training for Ministry, we had what is called a Social Context

Placement as part of our training. People went out to work alongside

Navy chaplains or prisons or schools, all sorts of different things. One of

the things on offer was a placement in a Methodist Care Home for

Dementia. I jumped at the chance having seen and been part of that

journey with my grandfather. Seeing those times where he really didn‟t

know who we were and other times when his sense of humour was

totally and utterly there and he would know us again. I was interested in

exploring that, and so I spent a week in a Methodist Care Home in North

Wales.

What really intrigued me there was because it was a faith based care

home and they had services as well, that even when people had

forgotten their names, their families, all sorts of other things about

themselves, they remembered the prayers and the hymns. The liturgies

seemed to be deeply embedded in them and they would speak them

out. I did some project work, once I returned to college, looking at

spirituality and ageing and dementia, and how important that is for

people.

I remember reading an incredible book by an American church pastor

who had early onset dementia and he said that in those moments of

more clarity, the thing he feared most was losing God, and although he

knew he couldn‟t lose God, it was his greatest fear. He asked that

people didn‟t stop speaking with him about God, didn‟t stop praying with

him and didn‟t let him lose that sense of who God was. I came to the

conclusion that we never lose God. God is always there, and in some

ways, when other spaces appear in ourselves or when we lose parts of

ourselves, there is actually more space for God.

Now part of what I do is I hold communion at Wheaton Aston Court once

a fortnight. We tend to not just talk about the service or about God, but

other things their memories throw up as well. We had a discussion about

dance halls last week after communion, which was rather lovely! During

communion, I find that sometimes the congregation are not just speaking

their parts of the liturgy, they know mine off by heart as well! It‟s there,

it‟s in them, and I think that is incredible. So what interests me in terms

of spirituality and dementia is how we hold that for people, how when

something has been really important that isn‟t lost, how when people

have prayed all their lives that they continue to be prayed with, that we

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don‟t just write that off as something that is something they lose as they

lose other parts of themselves.

Here, we are four churches in a small community, so it is not always

easy for us to provide the kind of support we would like, however, we

can always put people in touch with the support they need. I think things

like our drop ins on a Tuesday and a Wednesday morning also provide

places people can come and be, and have fellowship and support.

If you are open and welcoming as a church community, that does mean

to everybody. I think there is a fear of people bringing their parents to

church if suddenly their parents become disruptive. They fear it in the

same way as when they brought toddlers to church, but they shouldn‟t.

Whether you have toddlers, or parents who are prone to the occasional

outburst that is inappropriate, it doesn‟t matter, it really doesn‟t. But it is

removing that fear in people I think, of being in church. Having services

where when you worship, you worship with your whole self, you worship

as you need to worship and it doesn‟t matter if that comes out at the

times that are the wrong times officially. It is about that sense of how we

use the things that people remember, how we make sure that their

worship is as successful as it can be and how we encourage people and

remind people who God is for them and who God is with them.

There was one lady last year who had been caring for a neighbour who

had dementia and the care burden on her was becoming greater. She

was caring for her parents and her grandchildren at the same time, and

this neighbour needed more and more care. For her, and for a lot of

people I think, there is the guilt that you cannot be a 24/7 carer.

Providing the space where people can talk about those sorts of things,

what they can and what they shouldn‟t be expected to do, what they

weren‟t built to do - it is important, but it‟s for a lot of people to explore

that and to support them in that. There is also that sense of if you are

spending a lot of time practically caring for somebody, it actually reduces

your ability to care emotionally and spiritually, and so it is okay to

relinquish some of that practical caring in order to give the emotional and

spiritual care as a friend or a neighbour or as a family member.

With church, it is about walking alongside people wherever they‟re at. It‟s

recognising, perhaps when people do need support, being with them

until they do. It is opening up the avenues to God in the same way you

would anybody who wants to explore, who wants that comfort, who

wants to pray. Praying for people for me is huge and the opportunity to

sit and talk with people, to reflect that things are important, that the

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things they have remembered are important, that the things they have to

let go of are okay as well, and reflecting on these things in prayer. Being

beside people and knowing where to send them for support, if there are

issues knowing the support for them and moving between those services

and the people receiving them, this is what we as a church community

provide. The constant thing to remind people is God is always with them

even if they are not remembering, God doesn‟t leave, God is there.

I met a gentleman who had dementia and I have never known the whole

of him. Whenever I was there during communion, all of a sudden he‟d be

feeling on the floor for something, and I would be trying to work out what

he was looking for and then I realised he was looking for his dog.

Remembering what people are doing when they are physically moving in

a space, especially towards the end of or later stages of dementia, that

repeating old patterns, old ways of being, helps.

Factsheet 417 The later stages of dementia

In a similar way, I knew a lady who had dementia. She would walk

around and around the lounge. You knew that she was doing something

that she remembered doing, and I was trying to work out what it was. I

found out her husband had been a minister and she had run Sunday

school and been really crucial in church. Then, you could tell that she

was running a Sunday school, and at one point she was giving out

books as prizes and she was repeating old things she had done,

occasionally she would even tell people off! I find that really interesting.

Factsheet 501 Walking about

In Heaven we are healed and we are restored, and all of us are made

new, our relationships, our minds, all of it is restored to how we ought to

be. There is that promise that comes at the other side of dementia.

Which, I guess is different with a Christian approach to dementia then

perhaps to other ways. Afterlife is redemption where everything is

healed and restored and people can take comfort in that but also

remember constantly that when it is dark, God is there and he loves

everyone. It doesn‟t matter where they are, who they have become, God

is with them and there‟s nothing that can get in the way of that. That is

our job to remind people of that constantly.

Church should be the place people can come and be themselves,

whatever that means, in front of God and it be okay. They can be angry,

sad, cross, joyful; they can be any of those things. Often, we hold those

things in tension and believe that to feel sad we ought to only be sad,

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and to feel happy we ought to only be happy. But life‟s not like that. We

hold those things in tension when you can lament and praise, almost at

the same time. Be absolutely and utterly yourself.

More information about the work in the parishes of Lapley with Wheat

Aston, Blymhill and Weston-under-Lizard can be found on this website.

St Peter‟s Church, Kinver

A son’s story

Page | 55

My father was diagnosed about two years ago. We recognised, probably

18 months prior to that, there was something a bit different, a bit strange.

At the time we didn‟t think about it being dementia.

The first instance was where, my daughter was owed some money and

it was unusual that my mum hadn‟t given her the money and when my

daughter questioned my mum about it, she said, „Oh, no, Grandad‟s told

me that he‟s paid you the money.‟ But he hadn‟t, and he was insistent

that he had.

We didn‟t really think that much of it at the time, but in hindsight that was

the very first thing that made me think that was out of the ordinary.

Another time was when Dad was still driving - it took him eight or nine

hours to do a journey that should have been about four. He got lost. He

said he had broken down and he had to get the AA. But when he later

related the account to me about what had happened, it didn‟t make any

sense to me. There were other little things also.

We were a bit worried, so we contacted my father‟s GP and the doctor

did a memory test. He didn‟t score too bad; it was sort of midway but the

doctor was concerned that Dad might have some memory problems. So

then he got referred down the system. It was probably about two years

ago before he formally had a diagnosis, but Mum and Dad weren‟t ready

to share that information with me, so I didn‟t know for about six months

afterwards.

The biggest thing that I have noticed is up till he went on some new

medication a few months ago he would have delusional thoughts. My

father thought he‟d won money he was convinced that he suddenly had

all this money he could spend. When he went shopping with my mum,

he‟d no grasp of finances, irrespective of whether they needed it,

irrespective of whether they‟d got money to buy it. There was a couple of

times where Dad got lost, he went to the bathroom and couldn‟t find it

and we had to have the police involved to help us find him. Sometimes,

he could become aggressive, particularly if there had been any sort of

confrontation. And he lost his inhibitions. We all think things, you know

we might look around the room and we might think something, but we

don‟t say it. My father would say it. And that can be quite embarrassing.

We were in a restaurant and there was a young couple with a child on

an adjoining table and Dad made some derogatory comments about the

way they were bringing this child up, because he didn‟t think it was right.

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That might be his opinion but saying exactly you‟re thinking, that can be

embarrassing and it was certainly embarrassing for my mother.

Factsheet 407 Drug treatments for Alzheimer‟s disease

Factsheet 408 Drugs used to relieve behavioural and

psychological symptoms in dementia

Factsheet 484 Making decisions and managing difficult situations

I do more caring for my parents then I used to. They live about forty-five

to fifty minutes away from us, so it‟s myself or my wife who takes them to

and from hospital appointments. I always go and do some shopping for

my mum once a week, and sometimes take her shopping. I have to do

more gardening as my dad was a keen gardener but he is just not that

interested anymore. My mum, although, she doesn‟t suffer from

dementia isn‟t as interested in cooking as she was so, I take them out for

more meals then we used to go out for. My mum, I would say, is almost

a fulltime carer for my father.

Dementia Friends‟ helped me make sense that my father has dementia.

I have had dementia training once, my wife‟s done it on a couple of

occasions and it‟s been very helpful. The mental health trust for the

area, and the national health organisation where my parents live,

support and have supported us also through their Memory Team

I sometimes think that you can never have enough information when it

comes to something like dementia because a lot of it is personal

experiences of how other people got through it. What I have discovered

is that no two people living with dementia are the same. There are

similarities, but there‟s no two identical scenarios, so talking to people

who have got relatives with dementia is very useful, particularly if they

have to do some caring for them.

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A final word from Mark Sutton

Cabinet Support Member for Social and Health Care Staffordshire County Council

I‟m a County Councillor and represent the division of Brewood. My

specific role is around social care and health. Within that I have

responsibility for our all age disability agenda, dementia, adult

safeguarding and mental health, to name a few. My role is to ensure we

are going in the direction that we want to go and to work with initiatives

such as Dementia Friends.

We‟re concerned about care and try to maintain independence for

people with dementia by offering support. We are looking at things like

dementia friendly areas, supporting events, and looking at communities

where we can raise awareness amongst the population about dementia

so people understand the impact effects of dementia. I have found that a

lot of people think dementia is memory loss, but it‟s more than that.

We are developing a number of Dementia Centres for Excellence. One

centre in Stafford has nursing accommodation for people living with

dementia who are not in the position to live at home because their needs

are great or they haven‟t a partner or people who could look after them.

Within that, there is a 1950s street that allows people to recognise things

that they may have been able to do or been a part of. This street has a

little cinema that is based on a miniature Staffordshire cinema, a pub,

café, hairdresser, and all are designed to resemble the 1950s. So if you

go and visit, instead of sitting in a room by the bed, you can go and

watch a film together or the residents can sit and watch a film together.

We would like a society across Staffordshire that understands and

appreciates the impact of dementia from the basis of being Dementia

Friends, so people understand. We are looking to create dementia

friendly towns and ensure that within communities there are areas that

offer support and activities people living with dementia can go to so they

don‟t feel socially isolated. We look to try and support, to raise

awareness. If you go to the county council offices, the receptionists have

been trained to be Dementia Friends, and our senior leadership team

have had Dementia Friends‟ training.

We want to ensure that we have within the whole of Staffordshire, the

capacity for people to have the care that they need. That may be

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domiciliary care, when people go into people‟s houses to deliver them

care, or to ensure there are sufficient spaces for people who need to be

in residential nursing care. To make sure that the care they receive is as

good as it can be, because the overall aim is to try and keep people, not

just dementia, but other elderly and frail people, in appropriate

accommodation.

We would like people to live in their own house for as long as possible,

but sometimes their own house isn‟t the most suitable location because

they might need additional care needs. It may be that the person needs

to go to a residential home because the extent of nursing care that

individual needs is quite extensive. So we are making sure that we have

got the right mix and enough capacity for the whole of the county. Part is

to ensure that we also have sufficient respite care so if carers want a

holiday, there is somewhere the person needing care can go and stay

for a week or two weeks, and carers know they are being looked after.

We need to make sure that all these things are in place in the right

amounts.

The Green, Wombourne

Page | 59

Factsheets and Booklets

A full list of the Alzheimer‟s Society factsheets and booklets can be found on their website

Useful Contacts

National Helpline – 0300 222 1122

Dementia Advisor – 01543 573736

Talking Point – online discussion forum for anyone affected by dementia

Singing for the Brain groups held weekly in Burton upon Trent, Cheadle, Lichfield and Wombourne. Contact 01543 573936 for further information

Dementia Connect –A new and improved dementia services directory with over 4,000 listings of local support and services (www.alzheimers.org.uk/localinformation/dementiaconnet)

The Good Life South Staffordshire – Services from across the district all in one place to make finding out what‟s there for you even easier. Packed with ideas and information on community groups, venues, activities and more. (www.southstaffordshire.thegoodlife.uk/net) or call 01902 696141 and speak to someone who can tell you what is available in your area

Carers Association South Staffordshire – CASS – providing emotional support and run monthly Living Well with Dementia groups in Stafford, Cannock, Burton, Burntwood, Codsall and Tamworth. Tel: 01785 222365 enquiries@carersinformation.org.uk

Monthly Alzheimers Support Evening – MASE – providing evening social support and information to those with dementia, their family, friends and carers in Haughton, Rugeley, Cannock, Hednesford and Stafford. Tel: 01785 823110 or 211140

South Staffordshire Age UK Careline – day care in Cannock, Tamworth and Penkridge – 01785 788477