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Reading about self-help books on dementia

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Abstract

'You are not alone with a good book' is particularly true for patients with dementia and their families. Feeling that the author has recognised you decreases that hollow sense of isolation and loneliness. It is important that there is a range of styles to suit different individuals. Too positive a manner may emphasise the reader's relative failure. All publications have a list of contact addresses at the end. There are fewer publications available for patients themselves, although the Alzheimer's Society has an excellent series of information sheets. Professionals and voluntary bodies are able to distance themselves emotionally and say things that close carers might be unable to do. Even so, styles differ and one needs to feel touched by a book to feel that someone understands your predicament and hence to decrease the sense of loneliness.
reading about
Read ing ab out s elf-he lp
books on dementia
Dementia is full of loss and loneliness. One
progressively loses neuropsycholo gical
abilities; relationships change, some are
lost; one feels in danger of losing one’s
se lf. Some behavioural change in
dementia may be seen as filling up this
developing emptiness. Family carers can
become progressively isolated from social
contacts and at the same time are losing
their intimate confidant(e) who has
previously been with them through diffi-
culties in life. Healthy people, when alone,
access memories and internal objects to
accompany them. The person with
dementia, although still having acce ss to
the affec ti ve aspects of objects, may
need to carry photographs, diaries and
not epads to structure the gaps in cogni-
tion; a self-help book may add to this
colle ction.
No treatment is a cure. Most clinical
management is aimed at p sychoeduca-
tion, at ameliorating behavioural and
personality changes and teaching coping
skills. Bibliotherapy fits into this approach.
There are many book s on this topic and
my choice has partially been constrained
by time. To collect the books I used a
library search and found o thers at
conferences.
A self-help book needs to contain
useful information and ideas for solving
problems. It should also be written in a
warm and sympath etic style. Individuals
will differ in the bo oks that appeal to
them and inevitably most books are
written f or the carer. Some are written
from personal experience of having
dementia or caring, and others are by
professionals or voluntary organisations.
Bo oks by p atient s and ca rers
I found only a few books written by
people with dementia or their c are rs.
These lead the reader through the parti-
cular emotional journey that t he patient or
carer has taken.
Dancing with Dementia
is written by
Christine Bryden, the Australian author
who was diagnosed with Alzheimers
disease at the age of 46, but whose
diagnosis subsequently changed to
frontotemporal dementia. Although she
acknowledges the struggle she had
assembling words, thoughts and notes
the author reflects on living positively
with dementia. She was supported by
her family, her Christian faith and the
Alzheimers movement. She travelled the
world in the cause of dementia and was
elected to the board of Alzheimers
Disease International. It is a readable book
which descr ibes her meeting with Nori
Graham and includes an email from Steve
Sabat. It is a particular story with more
general points: advice not to move house;
the pain of stigma; the value of routine,
organisation and planning ahead; the
isolation of patient and carer; affective
memory outliving cognitive memory.
The essence is that people with dementia
can still live well and can still maintain
old relationships and make new ones
(including marrying after the diagnosis).
The author casts aside the main fear that
people have of the disease ^ ‘loss of self’
^ instea d relying on God and her new
identity as a survivor.
Lisa Snyder, a social worker, for many
years supported patients wit h earlier
presentation of Alzheimers disease
through education, counselling and
guidance to families
In her book
Speaking Our Minds
she
has transcribed interviews with seven
individuals with dementia in which they
express their thoughts and feelings about
what it is like to have the disease and the
impact on their lives. The people inter-
viewed are of different age, ethnicity,
religious background and coping style.
They speak of things that give their lives
personal meaning and the author adds
some explanatory and empathetic
comments. The book is not a practical
guide but individual readers will find reso-
nance with at lea st some of the stories.
Each person is an individual and are as
different as individuals. As Betty, an
interv iewee, said a person with Alzhei-
mers disease is many more things than
just their diagnosis. Each person is a
whole human being’.
Books by carers seem to have been
written by those with cons iderable reli-
gious faith. This may be becaus e their faith
instils hope and the b elief in a be tt er life
to come, and the wish to share their
spiritual experience. However, all profes-
sionals know many carers who are
sus tained b y their past relations hip with
the patient rather than by religious belief.
In
Living Daily with Dementia
Shirley
Ashman tells of her father an ex -miner
with pneumoconiosis who developed
vascular dementia. As a Baptist the author
describes not only the practical help
available but also spiritual aid. The book
is written as a diary with day-to-day
recollections and entrie s. It has a pedes-
trian feel and I would have sympathy with
tho se who found it unreadable ^ no t a
lot to report today. The book ends rather
abruptly on the day that father is
admitted to residential care and gives the
erroneous impression that that is the e nd.
On the posit ive side it does introduce the
idea that uncharacteristic behaviour may
be a result of the illness and should not be
taken personally or the patient blamed.
Some useful contacts in Wales are listed.
Alone with Dementia
by Margaret
Jeremiah, a Quaker, is a bleak account of
uncharacteristic anger and aggression
as sociated witih vascular dementia and
the move of her husband from a small
village in Norfolk to a residential care
home. The style of writing is rather cold
and sparse, and will not appeal to
every one, but may reflect a way of
coping.
A Guide to the Spiritual Dimension of
Care for People with Alzheimers Disease
and Related Dementia
by Eileen Shamy
crosses the divide b etween books written
by professionals and those wri tt en from
personal experience. Drawing on her work
as a cler gywoman with older people in
care and caring for her own mother with
Alzheimers disease, it was or iginally
published in New Zealand where the work
was undertaken. The foreword by Bob
Baldwin mentions the unwitting sidelining
of older people with confusion by the
Church. There are many references to
The
Bible
and discussion of discrimination and
negative attitudes among people who are
usually caring. There is a brief description
of Alzheimers disease for a non-clinical
audience and suggestions about how to
communicate mos t effectively with
people with dementia. The book discusses
worship needs at different stages of the
disease and urges clergy and congrega-
tions to be aware of Alzheimers disease
and not to allow peopl e to drop through
the cracks of the pastoral care network.
There is mention of the importance of
rituals, familiar music and the reco gnition
of clergy clothes and symbols.
Publications
by charitable bodies
Publications from charitable/voluntary
bodies are on the whole excellent.
However,
Understanding Dem entia
(published by Mind and available from
their online shop) contains rather
unhelpful critic ism of general practitioners
which sets professionals and carers into
adversarial camps.
The
Patient^Carer Pack
from the
Alzheimers Society includes space for
personal information and contact
numbers, as well as tips from other
people with dementia about coping
psychologically and practically with
every day problems. The information for
patients is direct and factual with topics
including advance directives, managing
money and depression. The Society also
produces many brief, readable publica-
tions, an excellent series of fact sheets for
people with dementia, information sheets
Columns Reading ab out
columns
118
about a diverse range of topics and diag-
noses, and advice sheets addressing diffi-
culties which may be associated with the
illness (http://www .alzheimers. org.uk/
Facts____about____dementia/factsheets.htm).
The Mental Health Foundation has
produced
Still Going Strong
, a booklet
about living with dementia, and a similar
booklet for carers (
Becoming a Carer
;
http://www.mentalhealth.org. uk/
publications). The positive foreword is
written by someone with dementia. The
publication discusses practical planning for
the future and gives tips on how to cope
despite the disease. Wit hin the same
series is a booklet for children and young
people
The Milks in the Oven
,whichis
clearly written and would also be suitable
for adults having difficulty understanding
the disease in a friend or family member.
Age Concern has produced fact sheets
to help old er people understand care sys-
tems (http://www.ageconcern.org.uk/
AgeConcern/care____information.asp).
Paying for care is a complicated topic.
The pamphlets could have been written in
simpler language ^ the patient needing
care i s unlikely to understand the content
and families may also have problems
unless given guidance. Age Concern in
association wi th the Alzheimers Society
have published
Caring for Someone with
Dementia
by Jane Brotchie, which is a
clearly and concisely written publication
for carers who are either currently in a
crisis and needing information and reas-
surance or wanting to plan ahead. It is
accessible, sympath etic and practical and
describes what to expect from the time of
diagnosis through the progression of the
illness. It candidly c overs possible and
therefore permissible reactions to caring,
with the advice that one is not being
disloyal if one tells the doctor about
problems at home. Relatives describe how
they have regretted becoming carers. The
book includes the role of different health
professionals, what to tell children, how
to manage incontinence and aggre ssion,
finding a suitable home, making legal and
financial decisions (also covering Scotland)
and the benefits for which the patient
and/or carer may be eligible. It is particu-
larly helpful in discussing how caring may
affect the relationship between patient
and carer, c overing most negative p ossi -
bilitie s as well as love and compassion.
The
Down’s Syndrome and Dementia
Resource Pack
by Karen Todd, Vicky Turk
and Michelle Christmas is for family, care
staff and other professionals. The
emphasi s is on the individual, including the
pro s and cons of discussing the diagnosis
with the patient. There is recognition that
the family carer of someone w ith Down’s
syndrome and dementia may be elderly
and in need of care themselves. The
resource is well laid out and easy to use
for reference. There is an ex cellent account
of behavioural and communication changes,
some of which is also valuable for peop le
with dementia but without Downs
syndrome.
Bo oks by pr ofe ssional s
Understanding Forgetfulnes s and
Dementia
by Martyn, Gale and Smith is
for patients, carers, relatives and friends,
although really less for patients than for
others. The book has a useful guide on
using the internet as a source of further
information.
A Problem Solving Approach to Difficult
Behaviours in Dementia
(Kelcey) is a brief
book let written by a psychologist for
family and carers in the National Health
Servic e and social services. It recognises
that not every symptom or problem
behaviour in someone with dementia
arises as a direct conse quence of the
illness. It explores circumstances, interac-
tions and consequences as well as
thoughts about for whom the behaviour
is a problem to enable the development of
a strategy to deal w ith the situation; it
urges taking the time to think about the
behaviour rather than forcing the patient
to c hange.
Alzheimers Disease and Memory Loss
Explained
by Burns, Page and Winter is
primarily for patients and family carers. It
is a readable book and is particularly good
at describing carers’ possible reactions to
the severity of the patients signs and
symptoms.
The Simplicity of Dementia
is by Huub
Buijssen a D utch psychogerontologist
(clinical psychologist) whose father devel-
oped dementia. The b ook provides some
understanding for family members of
what may be seen as a non-comprehensible
mad’condition. Perhaps the disease is not
quite as simple as the title suggests, but
the book is written and laid out in a clear
style, with discussion and quotations from
carers, patients and other authors
followed by a summary at t he end of each
section. A useful message is that in a
battle between patient and carer there
are only two losers.
Dementia. Your Questions Answered
by
Brown (a neurologist) and Hillam (an old
age psychiatrist) is written for general
practitioners, nurs es and other healt h
professionals, but will also be useful f or
some informal carers who are interested
in learning more. The book is well thought
out and clearly addresses commonly
asked patient and carer questions, in
addit ion to gving more detailed answers
for staff.
Dementia, Alzheimers and Other
Dementias
by Cayton, Graham and
Warner answers frequent/likely questions
from carers, family and friends, divided
according to subject area, and has
delightful cartoons at the beginning of
each chapter. The book covers all aspec t s
of dementia and has a crisp matter-of-fact
style. People are likely to use the book as
a reference or read it chapter by chapter.
It is an excellent practical book for family
carers.
Summary
‘You are not alone with a good book is
particularly true for patients with
dementia and their families. Feeling that
the author has recognised you decreases
that hollow sense of isolation and loneli-
ness. It is important that there is a range
of styles to suit different individuals. Too
posi tive a manner may emphasise the
readers relative failure. All publications
have a list of contact addresses at the
end. There are fewer publications available
for patients themselves, although the
Alzheimers Society has an excellent series
of information sheets. Professionals and
voluntary bodies are able to distance
themselves emotionally and say things
that close carers might be unable to do.
Even so, styles differ and one needs to
feel touched by a book to feel that
someone understands your predicament
and hence to decrease the sense of
loneliness.
ASHMAN, S. (2002)
Living Daily wit h Dementia
.
Scotforth Books.
BROTCHIE, J. (2003)
Caring for Someone with
Dementia
. Age Concern Books.
BROWN, J. & HILLAM, J. (2004)
Dementia.Your
Questions Answered
. Churchill Livingstone.
BRYDEN, C. (200 5)
Dancing with Dementia
. Jessica
Kingsley.
BUIJSSEN, H. (2005)
The Simplicity of Dementia. A
Guide for Family and Carers
. Jessica Kingsley.
BURNS A., PAGE, S. & WINTER, J. (2001)
Alzheimers
Diseas e and Memory Loss Explained
.Altman.
CAYTON, H., GRAHAM, N. & WARNER, J. (2002)
Dementia: Alzheimers and Other Dementias
. Class
Publishing.
JEREMIAH, M. (2003)
Alone with Dementia
.William
Sessions.
KELCEY, C. (2000)
A Problem Solving Approach to
Difficult Behaviours in Dementia
. Kelcey Public ations.
MARTYN, C.N., GALE, C.R. & SMITH,T. (2002)
Underst anding Forgetfulness and Dementia
. Family
Doctor Publications.
SHAMY, E. (2003)
A Guide to the Spiritual Dimension
of Care for People with Alzheimers Disease and
Related Dementia
. Jessica Kingsley.
SNYDER, L. (2000)
Speaking Our Minds: Personal
Reflections from Individuals with Alzheimers
.
W. H. Freeman.
TODD, K.,TURK,V. & CHRISTMAS, M. (2002)
Downs
Syndrome and Dementia Resource Pack
. Foundation
for People with Learning Disabilities.
Jane Garner Consultant Psychiatrist , Department
of Old Age Psychiatry, Chase Farm Hospital,
The Ridgeway, Enfi eld EN2 8JL,
email: jane.garner@beh-mht.nhs.uk
doi: 10.1192/pb.bp.106.014043
Columns Reading about
columns
119
ResearchGate has not been able to resolve any citations for this publication.
Caring for Someone with Dementia
  • J Brotchie
BROTCHIE, J. (2003) Caring for Someone with Dementia. Age Concern Books.
  • J Brown
  • J Hillam
BROWN, J. & HILLAM, J. (2004) Dementia.Your Questions Answered. Churchill Livingstone.
Alzheimer's Disease and Memory Loss Explained
  • Burns A
  • S Page
  • J Winter
BURNS A., PAGE, S. & WINTER, J. (2001) Alzheimer's Disease and Memory Loss Explained. Altman.
Dementia: Alzheimer's and Other Dementias
  • H Cayton
  • N Graham
  • J Warner
CAYTON, H., GRAHAM, N. & WARNER, J. (2002) Dementia: Alzheimer's and Other Dementias. Class Publishing.
Understanding Forgetfulness and Dementia
  • C N Martyn
  • C R Gale
  • T Smith
MARTYN, C.N., GALE, C.R. & SMITH,T. (2002) Understanding Forgetfulness and Dementia. Family Doctor Publications.
Down's Syndrome and Dementia Resource Pack. Foundation for People with Learning Disabilities
  • K Todd
  • V Turk
  • M Christmas
TODD, K.,TURK,V. & CHRISTMAS, M. (2002) Down's Syndrome and Dementia Resource Pack. Foundation for People with Learning Disabilities.
Living Daily with Dementia
  • S Ashman
ASHMAN, S. (2002) Living Daily with Dementia. Scotforth Books.
The Simplicity of Dementia. A Guide for Family and Carers
  • H Buijssen
BUIJSSEN, H. (2005) The Simplicity of Dementia. A Guide for Family and Carers. Jessica Kingsley.
A Problem Solving Approach to Difficult Behaviours in Dementia
  • C Kelcey
KELCEY, C. (2000) A Problem Solving Approach to Difficult Behaviours in Dementia. Kelcey Publications.