Download A pioneering care project demonstates how

Amersham
Deanery
Handout Session 8a
Extra Handouts
Foundation Course in
Pastoral Care
: Creative Communicating
Understanding and respecting the person with dementia
It's very important that people with dementia are treated with respect. It is important
to remember that a person with dementia is still a unique and valuable human being,
despite their illness. If you can understand what the person is going through, it might
be easier for you to realise why they behave in certain ways.
When a person with dementia finds that their mental abilities are declining, they often
feel vulnerable and in need of reassurance and support. The people closest to them including their carers, health and social care professionals, friends and family - need
to do everything they can to help the person to retain their sense of identity and
feelings of self-worth.
Helping the person feel valued
The person with dementia needs to feel respected and valued for who they are now,
as well as for who they were in the past. There are many things that the people
around them can do to help, including:
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trying to be flexible and tolerant
making time to listen, have regular chats, and enjoy being with the person
showing affection in a way they both feel comfortable with
finding things to do together.
What's in a name?
Our sense of who we are is closely connected to the names we call ourselves. It's
important that people address the person with dementia in a way that the person
recognises and prefers.
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Some people may be happy for anybody to call them by their first name or
nickname.
Others may prefer younger people, or those who do not know them very well,
to address them formally and to use courtesy titles, such as Mr or Mrs.
Respecting cultural values
Make sure you explain the person's cultural or religious background, and any rules
and customs, to anyone from a different background so that they can behave
accordingly.
These may include:
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respectful forms of address
© 2013 Amersham Deanery – Foundation Course in Pastoral Care
© Factsheets by Alzheimer’s Association – reproduced by permission
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what they can eat
religious observances, such as prayer and festivals
particular clothing or jewellery that the person (or those in their presence)
should or should not wear
any forms of touch or gestures that are considered disrespectful
ways of undressing
ways of dressing the hair
how the person washes or uses the toilet.
Acting with courtesy
Many people with dementia have a fragile sense of self-worth; it's especially important
that people continue to treat them with courtesy, however advanced their dementia.
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Be kind and reassuring to the person you're caring for without talking down to
them.
Never talk over their head as if they are not there - especially if you're talking
about them. Include them in conversations.
Avoid scolding or criticising them - this will make them feel small.
Look for the meaning behind their words, even if they don't seem to be making
much sense. Whatever the detail of what they are saying, the person is usually
trying to communicate how they feel.
Try to imagine how you would like to be spoken to if you were in their position.
Respecting privacy
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Try to make sure that the person's right to privacy is respected.
Suggest to other people that they should always knock on the person's
bedroom door before entering.
If the person needs help with intimate personal activities, such as washing or
using the toilet, do this sensitively and make sure the door is kept closed if
other people are around.
Everyone involved - including the person's friends, family members, carers, and
the person with dementia themselves - reacts to the experience of dementia in
their own way. Dementia means different things to different people.
There are lots of things you can do to help the person with dementia feel good about
themselves. This factsheet offers some suggestions.
Helping the person feel good about themselves
When you spend time with someone with dementia, it is important to take account of
their abilities, interests and preferences. These may change as the dementia
progresses. It's not always easy, but try to respond flexibly and sensitively.
Supporting the person to express their feelings
Dementia affects people's thinking, reasoning and memory, but the person's feelings
remain intact. A person with dementia will probably be sad or upset at times. In the
earlier stages, the person may want to talk about their anxieties and the problems
they are experiencing.
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Try to understand how the person feels.
© 2013 Amersham Deanery – Foundation Course in Pastoral Care
© Factsheets by Alzheimer’s Association – reproduced by permission
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Make time to offer them support, rather than ignoring them or 'jollying them
along'.
Don't brush their worries aside, however painful they may be, or however
insignificant they may seem. Listen, and show the person that you are there for
them.
Offering simple choices
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Make sure that, whenever possible, you inform and consult the person about
matters that concern them. Give them every opportunity to make their own
choices.
Always explain what you are doing and why. You may be able to judge the
person's reaction from their expression and body language.
People with dementia can find choice confusing, so keep it simple. Phrase
questions so that they only need a 'yes' or 'no' answer, such as 'Would you like
to wear your blue jumper today?' rather than 'Which jumper would you like to
wear today?'
Tips: maintaining respect
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Avoid situations in which the person is bound to fail, as this can be humiliating.
Look for tasks that they can still manage and activities they enjoy.ive plenty of
encouragement. Let them do things at their own pace and in their own way.
Do things with the person, rather than for them, to help them retain their
independence.
Break activities down into small steps so that they feel a sense of achievement,
even if they can only manage part of a task.
Our self-respect is often bound up with the way we look. Encourage the person
to take pride in their appearance, and compliment them on how they look.
Supporting other carers
Make sure that anyone involved in caring for the person has as much background
information as possible, as well as information about their present situation. This will
help them see the person they're caring for as a whole person rather than simply
'someone with dementia'. It may also help them to feel more confident about finding
conversation topics or suggesting activities that the person may enjoy.
If someone is not used to being around people with dementia, it may help to
emphasise the following points:
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Dementia is nothing to be ashamed of. It is no one's fault.
If the person tends to behave in ways that other people find irritating or
upsetting, this may be because of the dementia - it's not deliberate.
The person with dementia may remember the distant past more clearly than
recent events. They are often happy to talk about their memories, but anyone
listening needs to be aware that some of these memories may be painful.
Always try to remember
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Each person with dementia is a unique individual with their own individual
experiences of life, their own needs and feelings, and their own likes and
dislikes.
Although some symptoms of dementia are common to everyone, dementia
affects each person in different ways.
© 2013 Amersham Deanery – Foundation Course in Pastoral Care
© Factsheets by Alzheimer’s Association – reproduced by permission
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For details of Alzheimer's Society services in your area, visit
alzheimers.org.uk/localinfo
For information about a wide range of dementia-related topics, visit
alzheimers.org.uk/factsheets
Factsheet 524 Last updated: March 2010, Last reviewed: May 2008, Reviewed by:
Cathy Baldwin, Dementia Learning and Development Adviser, Alzheimer's Society
This factsheet is also available in Arabic, Bengali, Chinese, French, Gujarati, Polish,
Punjabi, Somali and Tamil.
Communicating with Dementia sufferers
We all need to communicate with other people. Communicating our needs, wishes and
feelings is vital − not only to improve our quality of life, but also to preserve our
sense of identity. If you need to communicate with someone with dementia, it's
important to encourage the person to do so in whichever way works best for them.
We tend to think of communication as talking, but in fact it consists of much more
than that. As much as 90 per cent of our communication takes place through nonverbal communication, such as gestures, facial expressions and touch.
Non-verbal communication is particularly important for a person with dementia who is
losing their language skills. What is more, when a person with dementia behaves in
ways that cause problems for those caring for them, it is important to realise that
they may be trying to communicate something.
Dementia and language
An early sign that someone's language is being affected by dementia is that they can't
find the right words − particularly the names of objects. The person may substitute an
incorrect word, or may not find any word at all.
There may come a time when the person can hardly communicate through language
at all. Not only will they be unable to find the words of objects: they may even forget
the names of friends and family. People with dementia often confuse the
generations − mistaking their wife for their mother, for example. This may be very
distressing for their loved ones, but it's a natural aspect of their memory loss.
The person with dementia may be trying to interpret a world that no longer makes
sense to them because their brain is processing information incorrectly. Sometimes
the person with dementia and those around them will misinterpret each other's
attempts at communication. These misunderstandings can be difficult, and may
require some support.
Difficulties with communication can be upsetting and frustrating for the person with
dementia and for those around them, but there are lots of ways to help make sure
that you understand each other.
Tips: communicating with someone with dementia
General advice
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Listen carefully to what the person has to say.
© 2013 Amersham Deanery – Foundation Course in Pastoral Care
© Factsheets by Alzheimer’s Association – reproduced by permission
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Make sure you have their full attention before you speak.
Pay attention to body language.
Speak clearly.
Think about how things appear in the reality of the person with dementia.
Consider whether any other factors are affecting communication.
Use physical contact to reassure the person.
Show respect and patience, remember it may take longer for the brain to
process the information and respond.
Listening skills
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Try to listen carefully to what the person is saying, and give them plenty of
encouragement.
If the person has difficulty finding the right word or finishing a sentence, ask
them to explain in a different way. Listen out for clues.
If you find the speech hard to understand, use what you know about the person
to interpret what they might be trying to say. But always check back to see if
you are right − it's infuriating to have your sentence finished incorrectly by
someone else!
If the person is feeling sad, let them express their feelings without trying to
'jolly them along'. Sometimes the best thing to do is to just listen, and show
that you care.
Attracting the person's attention
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Try to catch and hold the attention of the person before you start to
communicate.
Make sure they can see you clearly.
Make eye contact. This will help them focus on you.
Try to minimise competing noises, such as the radio, TV, or other people's
conversation.
Using body language
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A person with dementia will read your body language. Agitated movements or a
tense facial expression may cause upset or distress, and can make
communication more difficult.
Be calm and still while you communicate. This shows the person that you are
giving them your full attention, and that you have time for them.
Never stand over someone to communicate: it can feel intimidating. Instead,
drop below their eye level. This will help the person to feel more in control of
the situation.
Standing too close to the person can also feel intimidating, so always respect
their personal space.
If words fail the person, pick up cues from their body language. The expression
on their face, and the way they hold themselves and move about, can give you
clear signals about how they are feeling.
Speaking clearly
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As the dementia progresses, the person will become less able to start a
conversation, so you may have to start taking the initiative.
© 2013 Amersham Deanery – Foundation Course in Pastoral Care
© Factsheets by Alzheimer’s Association – reproduced by permission
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Speak clearly and calmly. Avoid speaking sharply or raising your voice, as this
may distress the person even if they can't follow the sense of your words.
Use simple, short sentences.
Processing information will take the person longer than it used to, so allow
enough time. If you try to hurry, they may feel pressured.
Avoid asking direct questions. People with dementia can become frustrated if
they can't find the answer, and they may respond with irritation or even
aggression. If you have to, ask questions one at a time, and phrase them in a
way that allows for a 'yes' or 'no' answer.
Try not to ask the person to make complicated decisions. Too many choices can
be confusing and frustrating.
If the person doesn't understand what you are saying, try getting the message
across in a different way rather than simply repeating the same thing.
Humour can help to bring you closer together, and is a great pressure valve.
Try to laugh together about misunderstandings and mistakes − it can help.
Whose reality?
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As dementia progresses, fact and fantasy can become confused. If the person
says something you know isn't true, try to find ways around the situation rather
than responding with a flat contradiction.
If the person says 'We must leave now − Mother is waiting for me', you might
reply, 'Your mother used to wait for you, didn't she?'
Always avoid making the person with dementia feel foolish in front of other
people.
Physical contact
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Even when conversation becomes more difficult, being warm or affectionate can
help carers to remain close to their loved ones, or for the person with dementia
to feel supported.
Communicate your care and affection by the tone of your voice and the touch of
your hand.
Don't underestimate the reassurance you can give by holding or patting the
person's hand or putting your arm around them, if it feels right.
Show respect
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Make sure no one speaks down to the person with dementia or treats them like
a child, even if they don't seem to understand what people say. No one likes
being patronised.
Try to include the person in conversations with others. You may find this easier
if you adapt the way you say things slightly. Being included in social groups can
help a person with dementia to preserve their fragile sense of their own
identity. It also helps to protect them from overwhelming feelings of exclusion
and isolation.
If you are getting little response from the person, it can be very tempting to
speak about the person as if they weren't there. But disregarding someone in
this way can make them feel very cut off, frustrated and sad.
Other causes of communication difficulty
It is important to bear in mind that communication can be affected by other factors in
addition to dementia − for example:
© 2013 Amersham Deanery – Foundation Course in Pastoral Care
© Factsheets by Alzheimer’s Association – reproduced by permission
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pain, discomfort, illness or the side-effects of medication. If you suspect this
might be happening, talk to the person's GP at once
problems with sight, hearing or ill-fitting dentures. Make sure the person's
glasses are the correct prescription, that their hearing aids are working
properly, and that their dentures fit well and are comfortable.
Factsheet 500, Last updated: May 2010, Last reviewed: May 2010
Reviewed by Cathy Baldwin, Programme Delivery Manager, Knowledge and Learning,
Alzheimer's Society
Maintaining everyday skills
It is easy to assume that adults with dementia will inevitably lose everyday skills and
become dependent on others. With time, dementia can affect a person's skills;
however the degree of impairment will vary from person to person. It is important for
people with dementia to remain as active as possible. Being active helps people with
dementia to feel good about themselves. This factsheet offers ideas for supporting
someone with dementia to continue to take part in everyday activities.
People with dementia need to continue carrying out as many of their previous
activities as independently as possible, in order to retain their skills. Doing things for
themselves will enhance their physical, social and emotional well-being, through the
preservation of their dignity, confidence and self-esteem.
If you spend time with someone with dementia, you need to support and encourage
them to do whatever they can for themselves, and to offer only as much help as they
need. This is not always easy - not least because it may be frustrating watching
something being done slowly when you could do it more quickly and easily yourself.
But even if the person is struggling with a task, try to avoid the temptation to take
over. If you do, they may lose confidence and are likely to cope less well.
Tips: helping out
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If you do need to offer help, try to do things with, rather than for, the person.
This will help them feel more involved.
Always try to focus on what the person can do rather than what they can't.
Remember that they may have a short attention span and may find it hard to
remember or concentrate on things.
Try to be patient, and allow plenty of time and rest breaks in between tasks.
Give plenty of praise and encouragement.
If you feel yourself becoming irritated or frustrated, think how the person might also
be feeling. Take time out to give yourself, and the person, some time alone. If you
feel that you both need some time apart, make sure that the person is safe, and then
go into another room for a few minutes. Remember, it is important to look after
yourself. You do not have to do this alone; there is support available, including the
Alzheimer's Society Helpline (see Useful organisations). For more advice, see
Factsheet 523, Carers: looking after yourself.
Offer help sensitively
As the dementia progresses, the person may find certain tasks increasingly difficult,
while others may remain manageable for much longer. By helping sensitively, you can
offer support while enabling them to do what they can for themselves. You will need
© 2013 Amersham Deanery – Foundation Course in Pastoral Care
© Factsheets by Alzheimer’s Association – reproduced by permission
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to adjust the level of help you offer, so that they can continue to make the best use of
their remaining skills.
Tips
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Try breaking the task down into sections. For example, the person may find it
easier to continue dressing themselves if you put the clothes out for them in
the order that they need to put them on. Or you could pass the next garment to
the person, holding it out ready for them to grasp at the right place, or
encourage them to put their vest on over their head before you straighten it
down for them.
Even if the person can't complete a full task, carrying out one or two steps of it
- particularly the final step - can give them a sense of achievement.
Make sure that any reminders or instructions are simple. Use short sentences,
with gestures and body language to add meaning.
Be tactful. Try to imagine that you are the person receiving help, and speak in a
way that you would find helpful if you were in their position.
Try doing things together, such as folding clothes or drying dishes.
Try integrating opportunities to do things into the daily routine.
Make sure that the person doesn't feel that they are being supervised or
criticised in any way. This means checking your tone of voice as well as the
words that you use.
When the dementia is at a more advanced stage, try pointing, demonstrating,
or guiding an action rather than giving a verbal explanation. For example, the
person may be able to brush their own hair if you hand them the brush and
start by gently guiding their hand. Use your voice to make reassuring and
encouraging sounds rather than using actual words.
Make sure the person feels safe
Feeling safe is essential for our sense of well-being, but for a person with dementia
the world may feel like an unsafe place for much of the time. Most of us can only
imagine how frightening it must be to experience the world in this way.
Tips
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Respond to how the person is feeling at that very moment.
Be reassuring, and avoid confronting them with distressing reminders or tasks.
Remember, the more you can help the person not to feel anxious and stressed,
the more likely they are to be able to use their skills to the best advantage.
Make sure they have things to do
We all need to feel useful. This is as true for people with dementia as it is for anyone
else. Encouraging the person to carry out activities around the home or garden is a
way of enabling them to feel needed while maintaining their everyday skills. In the
home, they may like to carry out simple tasks, such as dusting, polishing, folding
clothes, laying and clearing tables, drying dishes and sorting cutlery. Work in the
garden might include digging, watering, raking or sweeping leaves.
Leisure activities are equally important. Try to help the person maintain skills related
to their past interests and habits. For example, if they used to enjoy carpentry, they
may get satisfaction from sanding a piece of wood. If they enjoyed cooking, they may
be able to advise you on a recipe or help prepare a particular dish by peeling the
vegetables. Encourage the person to go outdoors and possibly on accompanied
© 2013 Amersham Deanery – Foundation Course in Pastoral Care
© Factsheets by Alzheimer’s Association – reproduced by permission
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outings to the shops, garden centre and other public places. Sitting and chatting,
watching others and listening to music all count as 'activities'. Opportunities to engage
with children and animals can bring lots of pleasure too.
Tips
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Make sure the person has things to do. Aim for a balance between active and
passive activities, depending on what is important to the individual and their
energy levels.
Remember that it's more important that the person feels useful than that they
complete the task perfectly.
If you do have to redo a task that they have done, be very tactful, or try to do
it without their noticing.
Always thank the person for their help.
Use memory aids
You can use memory aids and other reminders to help the person use their skills for
longer. These may be of most help in the early to moderate stages of dementia when
the person is better able to understand the message and to act upon it.
Ideas include:
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labelling cupboards and drawers, perhaps using pictures rather than words - for
example, a photo of a cup and jar of coffee
a large calendar showing the day, month and year
a noticeboard for messages
notes stuck by the front door.
There are assistive technology aids designed to help people with memory problems,
however these should be considered carefully to determine if the equipment would
benefit the person with dementia primarily, and if the person wants to trial it. For
more information, see Factsheet 437, Assistive technology.
Help the person relax
There are plenty of things you can do to help the person feel calm and secure.
Tips
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Ensure that the person is as close as possible to people and things that they
recognise, and that they enjoy being with.
Make sure the atmosphere is relaxed and uncritical.
Try to ensure familiar surroundings and a regular routine, as this will be
reassuring.
Try to avoid too many conflicting sounds or large numbers of people, as this
can add to a person's confusion. If possible, turn off the radio or the television.
If the person needs to concentrate on something in particular, take them to a
quiet place.
If the person becomes upset or embarrassed by their declining abilities or
clumsiness, give them plenty of reassurance, and when things do go wrong, be
tactful and encouraging. Having a good laugh about it together often helps.
Consider seeking professional advice
© 2013 Amersham Deanery – Foundation Course in Pastoral Care
© Factsheets by Alzheimer’s Association – reproduced by permission
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If the person with dementia finds it particularly hard to cope with certain activities,
either because of the dementia or because of other disabilities, there may be some
recognised solutions out there. An occupational therapist can assess the difficulties
and can make recommendations to maximise independence, safety and confidence
when undertaking activities. This may be by adapting the task; by doing things using
a different approach or by using assistive technology. You can contact an occupational
therapist through:
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social services (look in the phone book under your local council)
your GP
your local memory service (ask your local hospital for details)
the College of Occupational Therapists (see 'Useful organisation', below), if you
would like details of a private practitioner.
If the occupational therapist recommends any changes, try to make them as soon as
possible, to give the person the best chance of absorbing new information. The earlier
you contact an occupational therapist, the more effective their solutions will be.
Fighting Alzheimer's with a touch of beauty
A pioneering care project demonstates how literature, music, art and love
can improve the lives of dementia sufferers
Margarette Driscoll, 28 February 2010 The Sunday Times
In her heyday, Rita Hayworth was known as the “Love Goddess”: so explosive was her
appeal that her image was placed on the first nuclear bomb to be tested on Bikini Atoll
after the second world war. As befits one of the world’s most glamorous women, she
danced her way through 61 movies and five husbands. She was a pin-up for American
servicemen and is listed as one of the American Film Institute’s greatest stars of all
time.
But if Hayworth’s early life was sprinkled with stardust, her later life was tinged with
tragedy. In her fifties, with a well established drink problem, she began to suffer
mood swings and memory loss.
“The first signs were fear and extreme mood changes, paranoia — calling the police
because she heard a burglar — and confusion. As a daughter I felt helpless,” says
Princess Yasmin Aga Khan, Hayworth’s daughter by her third husband.
Nobody knew what the real problem was until Hayworth was diagnosed with
Alzheimer’s in 1981, at just 63 years old. “It was extremely painful but I had to deal
with it,” says Khan, who moved her mother into an adjoining apartment in New York
and cared for her for the next six years until she died.
Hayworth’s behaviour could be nightmarishly difficult. She suffered from the anxiety,
aggression and agitation common to Alzheimer’s, but as the disease progressed she
found something that soothed her mood and gave her a focus — painting.
As her mind disintegrated, she worked away at an easel in her apartment, producing
beautiful, detailed likenesses of flowers. “So many people give up with this disease,”
says the princess, who is now president of Alzheimer’s Disease International, the
© 2013 Amersham Deanery – Foundation Course in Pastoral Care
© Factsheets by Alzheimer’s Association – reproduced by permission
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umbrella organisation for Alzheimer’s associations around the world, “but it brought
her peace of mind and helped her to relax.”
Could Hayworth’s experience help us to understand how to support and treat people
with Alzheimer’s? John Zeisel, the founder of a pioneering programme caring for
people with Alzheimer’s in the United States — endorsed by Khan — and a visiting
lecturer at Salford University, believes that it could.
“What the scientific research tells us is that Alzheimer’s attacks the part of the brain
that handles what we call logic — the executive function that copes with handling
complex situations. Taking a photograph, for instance: you have to find the camera,
slot in the memory chip, work out where the shutter button is and so on . . .
“But what’s not damaged is your appreciation of a beautiful picture. The part of the
brain that deals with emotions is shaken up by Alzheimer’s but it’s not damaged in the
same way. In fact, emotional response seems to be heightened, not lessened.”
In other words, people who appear to be lost to the world can still be reached through
art, literature and music — and love. At Hearthstone, a group of seven homes looking
after some 220 people with Alzheimer’s that Zeisel had helped to found in
Massachusetts, residents are encouraged to paint and are taken on regular outings to
galleries. They have reading circles and a film club.
“The development of new drugs to treat Alzheimer’s is helping people live a little bit
longer,” says Zeisel. “What we’re asking ourselves is, how do we make that life worth
living?”
Life expectancy remained low for centuries — in 1900 it was still only 47 — but
advances in medical science and public health have added another 30 years to our
lives. A British man can now expect to live until 77 and a woman until 81.
That increase in lifespan has brought with it a tidal wave of dementia, for which there
is no cure. There are 700,000 people living with dementia in the UK, some 417,000 of
them with Alzheimer’s. By 2015 that total is predicted to reach 1m and by 2050 it will
be 1.7m.
“Everything has happened so fast we don’t know what’s hit us,” says Zeisel. “One of
the reasons everybody’s so afraid of Alzheimer’s is that there are so many unknowns.
When someone is diagnosed, we grieve for their lost future. But maybe everything
isn’t lost: we have to get past the fear and grief to see what remains.”
I’m Still Here, Zeisel’s book about the development of the Hearthstone programme, is
to be published in paperback by Piatkus next month. On March 15 he is hosting an
arts and dementia day at London’s October gallery, an event that is already booked
out.
One of the first things the Hearthstone team looks for is an activity that elicits a
response from a new resident. It might be an old hobby — gardening, perhaps — or
something new. “Families come in and say, ‘My father doesn’t dance’, and I say, ‘Well,
we’ll see — maybe he’s never been surrounded by women and nice music before’.”
They then build a routine around the activity. George, a former teacher, arrived at
Hearthstone anxious and aggressive and, on the assumption that he would like books,
© 2013 Amersham Deanery – Foundation Course in Pastoral Care
© Factsheets by Alzheimer’s Association – reproduced by permission
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was taken to the library. He now runs a residents’ book circle at 10 o’clock each
morning.
“It’s a reason to get up and get dressed,” says Zeisel. “If he’s upset or confused, the
staff will say, ‘You’ve got to get dressed, the book group needs you’. He has a
meaningful role. He passes books around, he and the others read aloud. Often people
with dementia give up on reading because the type is too small. It seems confusing
but it’s easy to fix — our books have large type.”
This kind of meaningful role, plus a simple routine, is key to helping people with
dementia cope with life. “It’s not just about activities,” says Zeisel. “If it’s ‘bingo at
10, muffins at 11’ one day and ‘reading at 10, gardening at 11’ tomorrow, that
doesn’t work. It’s confusing. If we go to an art gallery, we go every Tuesday at 11.
Someone might say they don’t want to go but after a month they’ll wake up and hear
it’s Tuesday and think, ‘Okay, it’s gallery day’.”
One of the things we need to get away from is the constant testing of people with
dementia, he says. Bombarding them with questions compounds confusion with a
sense of failure. Rather than say, “Mum, do you know who I am?” it is better to walk
in, take her by the hand and say, “I’m your daughter and I love you.” And smile.
You’ll reach the bit of the brain hard-wired to respond. If you are looking at a
painting, don’t test her on whether she can remember who it is by: instead, open a
conversation about the shapes and colours.
People with Alzheimer’s need to stay useful. They might not be able to find the dinner
plates, but if you get the plates out of the cupboard they can put them on the table.
This is not a cure, nor even a replacement for drugs, although Zeisel insists that the
more effective the “person-centred” care, the lower the need for the antipsychotic
drugs used to treat Alzheimer’s.
In essence, it is about quality of life for the people with Alzheimer’s and their families.
You don’t need a team of highly trained art therapists on hand to make a difference. If
you are one of the thousands of people stuck at home caring for someone with
Alzheimer’s — saving the government an estimated £6 billion a year in the process —
here’s what to do.
“Start an Alzheimer’s community,” says Zeisel. “There will be a cafe near you that’s
quiet at 10 o’clock on a Tuesday morning run by some nice person who will smile at
your mother. Find other people in your situation and invite them along.
“Go to a museum, same date, same time. Create a routine so the person you’re
looking after gets used to it and expects it.
“Start your own film club. Rent a bunch of films you think your mother might like. See
what interests her. It might be she can’t watch a whole movie but loves 10 minutes of
Singin’ in the Rain. Play it when she’s agitated and remember: everybody is
reachable, it’s just finding the way to do it.”
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Depression
Depression is common. Symptoms can affect day-to-day life and can
become very distressing. Treatments include talking treatments and
antidepressant medicines. Treatment takes time to work but has a
good chance of success. Some people have recurring episodes of
depression and require long-term treatment to keep symptoms
away.
What is depression?
The word depressed is a common everyday word. People might say "I'm depressed"
when in fact they mean "I'm fed up because I've had a row, or failed an exam, or lost
my job" etc. These ups and downs of life are common and normal. Most people
recover quite quickly.
With true depression, you have a low mood and other symptoms each day for at least
two weeks. Symptoms can also become severe enough to interfere with day-to-day
activities.
Who gets depression?
About 2 in 3 adults have depression at some time in their life. Sometimes it is mild or
lasts just a few weeks. However, an episode of depression serious enough to require
treatment occurs in about 1 in 4 women and 1 in 10 men at some point in their lives.
Some people have two or more episodes of depression at various times in their life.
What are the symptoms of depression?
Many people know when they are depressed. However, some people do not realize
when they are depressed. They may know that they are not right and are not
functioning well, but don't know why. Some people think that they have a physical
illness, for example, if they lose weight.
The following is a list of common symptoms of depression. It is unusual to have them
all, but several usually develop if you have depression.
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Low mood for most of the day, nearly every day. Things always seem 'black'.
Loss of enjoyment and interest in life, even for activities that you normally
enjoy.
Abnormal sadness, often with weepiness.
Feelings of guilt, worthlessness, or uselessness.
Poor motivation. Even simple tasks seem difficult.
Poor concentration. It may be difficult to read, work, etc.
Sleeping problems:
o sometimes difficulty in getting off to sleep.
o sometimes waking early and unable to get back to sleep.
o sleeping too much sometimes occurs.
Lacking in energy, always tired.
Difficulty with affection, including going off sex.
Poor appetite and weight loss. Sometimes the reverse happens with comfort
eating and weight gain.
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Irritability, agitation, or restlessness.
Symptoms often seem worse first thing each day.
Physical symptoms such as headaches, palpitations, chest pains, and general
aches.
Recurrent thoughts of death. This is not usually a fear of death, more a
preoccupation with death and dying. Some people get suicidal ideas such as
..."life's not worth living".
The severity of the symptoms can vary from mild to severe. As a rule, the more
symptoms from the list above that you have, the more severe the depression is likely
to be.
What causes depression?
The exact cause is not known. Anyone can become depressed. Some people are more
prone to it, and it can develop for no apparent reason. You may have no particular
problem or worry, but symptoms can develop quite suddenly. An episode of
depression may also be triggered by a life event such as relationship problem,
bereavement, redundancy, illness, etc. In many people it is a mixture of the two. For
example, the combination of a mild low mood with some life problem, such as work
stress, may lead to a spiral down into depression.
Women tend to develop depression more often than men. Particularly common times
for women to become depressed are after childbirth (postnatal depression) and the
menopause.
A chemical imbalance in the brain might be a factor. This is not fully understood.
However, an alteration in some chemicals in the brain is thought to be the reason why
antidepressants work in treating depression.
Some myths and other points about depression
Depression is common, but many people don't admit to it. Some people feel there is a
stigma attached, or that people will think they are weak. Great leaders such as
Winston Churchill have suffered depression. Depression is one of the most common
illnesses that GPs deal with. People with depression may be told by others to 'pull
their socks up' or 'snap out of it'. The truth is, they cannot, and such comments by
others are very unhelpful.
Understanding that your symptoms are due to depression, and that it is a common
illness, may help you to accept that you are ill and need help. This may be particularly
true if you have physical symptoms such as headache or weight loss. Some people
ask "am I going mad?" It may be a relief to know that you are not going mad, and the
symptoms that you have are common and have been shared by many other people.
You may 'bottle up' your symptoms from friends and relatives. However, if you are
open about your feelings with close family and friends, it may help them to
understand and help.
What are the treatment options for depression?
In general, treatments are divided into those used for mild depression and those used
for moderate and severe depression.
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What if I dont have any treatment?
Most people with depression would get better without treatment. However, this may
take several months or even longer. Meanwhile, living with depression can be difficult
and distressing (and also for your family and friends). Relationships, employment, etc,
may be seriously affected. There is also a danger that some people turn to alcohol or
illegal drugs. Some people think of suicide. Therefore, many people with depression
opt to try some form of treatment.
Treatment options for mild depression
In general, mild depression means that you have some of the symptoms listed above,
but are still able to cope reasonably well with normal activities. For example, you may
still be able to do your normal job, and get by with household chores, but perhaps
with difficulty. Your doctor may suggest one or more of the following.
Talking treatments (psychological treatments)
Talking through feelings may be all that you need for mild depression. Sometimes
talking with an understanding friend or relative is helpful. Your doctor may also 'talk
things through' with you or refer you to a counsellor. A brief course of cognitive
behavioural therapy may help (see below for further details of this.)
Specific counselling
In some cases there is a particular problem that triggered the depression, or is
making it worse. For example, marital problems, sexual problems, bereavement,
previous childhood abuse, etc. Counselling directed at a specific area may then be
helpful. Sometimes this may be done by a local agency or self-help group which deals
with specific problems. For example, RELATE for marital or sexual problems, or a
bereavement counsellor following a bereavement, etc.
An exercise programme
Research has shown that regular exercise can help to ease symptoms of depression in
some cases. A typical exercise programme to help ease depression would be three
'formal' sessions per week of moderate duration (45-60 minutes) for 10-12 weeks.
Aerobic exercises are probably best such as jogging, brisk walking, swimming, playing
a vigorous team sport such as football or netball, etc. However, ideally you should try
to get into the habit of doing some sort of exercise on most days in between any
'formal' exercise. For example, try to go out for a walk each day.
A self-help programme
There are various pamphlets, books, and audio tapes which can help you to
understand and combat depression. The best are based on the principles of cognitive
behavioural therapy. There is some evidence to say that a 'guided self help
programme' can help some people with mild depression to recover. That is, a
programme where the materials are provided by a doctor or nurse, and where a
doctor or nurse monitors your progress. These programmes take some motivation and
effort to work through - a bit like doing homework.
Computer and internet based self-help cognitive behavioural therapy programmes are
recent innovations and may become more popular.
Antidepressant medicines
Antidepressant medication (discussed in detail below) is not usually recommended for
the initial treatment of mild depression. However, an antidepressant may be advised
for mild depression in certain circumstances. For example, in people:
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with mild depression that persists after other treatments have not helped.
whose depression is associated with a physical illness.
who have had an episode of moderate or severe depression in the past.
Treatment options for moderate or severe depression
In general, moderate depression means that you have several of the symptoms listed
above, and you find great difficulty in coping with normal activities. Severe depression
is even worse. In these situations, a doctor may suggest one or more of the following.
Antidepressant medicines
Antidepressants are usually the first-line treatment for moderate or severe
depression. A medicine cannot alter your circumstances. However, symptoms such as
low mood, poor sleep, poor concentration, etc, are often eased with an
antidepressant. This may then allow you to function normally, and increase your
ability to deal with any problems or difficult circumstances.
Antidepressants do not usually work straight away. It takes 2-4 weeks before their
effect builds up fully. A common problem is that some people stop the medicine after
a week or so as they feel that it is doing no good. You need to give it time. Also, if it is
helping, follow the course that a doctor recommends. A normal course of
antidepressants lasts up to six months or more after symptoms have eased. Some
people stop treatment too early and the depression quickly returns.
There are several types of antidepressants, each with various 'pros and cons'. For
example, they differ in their possible side-effects. (The leaflet that comes in the
medicine packet provides a full list of possible side-effects.) If the first one that you
try does not suit, then another may be found that will suit. So, tell your doctor if you
have any problems with an antidepressant. Antidepressants are not tranquillisers and
are not thought to be addictive.
About 5-7 in 10 people with moderate or severe depression improve within a few
weeks of starting treatment with a prescribed antidepressant. However, up to 3 in 10
people improve with dummy tablets (placebo) as some people would have improved
in this time naturally. So, you are roughly twice as likely to improve with
antidepressants compared to taking no treatment. But, they do not work in
everybody.
Talking (psychological) treatments
If available in your area, an option is to be referred to a psychologist or other
professional for a more specific type of talking treatment. Most psychological
treatments for depression last in the range of 16-20 sessions over 6-9 months. For
example:
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Cognitive therapy. Briefly, cognitive therapy is based on the idea that certain
ways of thinking can trigger, or 'fuel', certain mental health problems such as
depression. The therapist helps you to understand your thought patterns. In
particular, to identify any harmful, unhelpful, and 'false' ideas or thoughts
which you have that can make you depressed. The aim is then to change your
ways of thinking to avoid these ideas. Also, to help your thought patterns to be
more realistic and helpful. Therapy is usually done in weekly sessions over
several months. You are likely to be given 'homework' between sessions.
Cognitive-behaviour therapy (CBT). This is a combination of cognitive therapy
and behaviour therapy. Behaviour therapy aims to change any behaviours
which are harmful or not helpful. In short, CBT helps people to achieve changes
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in the way that they think, feel and behave. (See separate leaflet for more
details on CBT.)
Other types of therapy sometimes used include: interpersonal therapy,
problem-solving therapy and psychodynamic psychotherapy.
For moderate depression, the number of people who improve with cognitive therapy
and cognitive behaviour therapy is about the same as with antidepressants. These
treatments may not be so good for some people with severe depression. This is
because you need some motivation to do these treatments and people with severe
depression often find motivation difficult.
Also, there is a shortage of trained therapists who can perform psychological
treatments. So, it might not be an option in your area, or there may be a long waiting
list.
Some research suggests that a combination of an antidepressant plus a talking
treatment such as CBT is better than either treatment alone.
Exercise and counselling
In addition to the above treatments, as with mild depression, regular exercise is
thought to help to improve symptoms (if you are able to do some exercise). Also,
counselling for a specific problem may help too if a particular problem is troubling you
(relationship breakdown, bereavement, etc).
Other treatments
St John's Wort (hypericum)
This is a herbal antidepressant that you can buy from pharmacies without a
prescription. It recently became a popular 'over the counter' treatment for depression.
However, many doctors now do not advise that you take this because:
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It is not clear how well it works. Although some studies suggest that it may
help depression, other studies have failed to confirm this.
Side-effects sometimes occur. (Some people think that because St John's wort
is 'natural' then it is totally safe. This is not true. It contains many chemicals
which sometimes cause problems.)
It may react with other medicines that you may take. Sometimes the reactions
can cause serious problems. For example, you should not take St John's wort if
you are taking warfarin, cyclosporin, oral contraceptives, anticonvulsants,
digoxin, theophylline, or certain anti-HIV medicines. Also, you should not take it
at the same time as certain other prescribed antidepressants.
Specialist and hospital based treatments
Other treatments such as specialist medicines or electrical treatment (ECT) may be
advised if you have severe depression which has not improved with other treatments.
Some dos and don'ts about depression
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Don't bottle things up and 'go it alone'. Try and tell people who are close to you
how you feel. It is not weak to cry or admit that you are struggling.
Don't despair - most people with depression recover. It is important to
remember this.
Do try and distract yourself by doing other things. Try doing things that do not
need much concentration but can be distracting such as watching TV. Radio or
TV is useful late at night if sleeping is a problem.
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Do eat regularly, even if you do not feel like eating.
Don't drink too much alcohol. Drinking alcohol is tempting to some people with
depression as the immediate effect may seem to relieve the symptoms.
However, drinking heavily is likely to make your situation worse in the long run.
Don't make any major decisions whilst you are depressed. It may be tempting
to give up a job, or move away, to solve the problem. If at all possible you
should delay any major decisions about relationships, jobs, or money until you
are well again.
Do tell your doctor if you feel that you are getting worse, particularly if suicidal
thoughts are troubling you.
Sometimes a spell off work is needed. However, too long off work might not be
so good as dwelling on problems and brooding at home may make things
worse. Getting back into the hurly-burly of normal life may help the healing
process when things are improving. Each person is different, and the ability to
work will vary.
Sometimes a specific psychological problem can cause depression, but some
people are reluctant to mention it. One example is sexual abuse as a child
leading to depression or psychological difficulties as an adult. Tell your doctor if
you feel something like this is the root cause of your depression. Counselling
may be available for such problems.
Will it happen again?
A 'one-off' episode of depression at some stage in life is common. However, some
people have two, three, or more episodes of depression. You can have treatment for
each episode. However, if you are prone to recurring episodes of depression, you may
be advised to take an antidepressant long-term to prevent depression from recurring.
Some related conditions
Postnatal depression
Some women develop depression just after having a baby. See separate leaflet called
'Postnatal Depression' for details.
Bipolar affective disorder
In some people, depression can alternate with periods of elation and over-activity
(mania or hypomania). This is called bipolar affective disorder or manic-depression.
Treatment tends to include mood stabiliser medicines such as lithium. See separate
leaflet called 'Bipolar Affective Disorder' for details.
Seasonal affective disorder
Some people develop recurrent depression in the winter months only. This is called
'Seasonal Affective Disorder' or SAD. For people in the UK with SAD, symptoms of
depression usually develop each year sometime between September and November,
and continue until March or April. You, and your doctor, may not realize that you have
SAD for several years. This is because recurring depression is quite common. You may
have been treated for depression several times over the years before it is realized that
you have the seasonal pattern of SAD. Treatment of SAD is similar to other types of
depression. However, 'light therapy' is also effective. See separate leaflet called
'Seasonal Affective Disorder' for details.
Other mental health problems
Depression sometimes occurs at the same time as other mental health problems.
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People with anxiety, panic disorder, and personality disorders quite commonly
also develop depression. As a rule, depression should be treated first, followed
by treatment of the other disorder. In particular, anxiety will often improve
following treatment of depression.
Eating disorders such as anorexia and bulimia may accompany depression. In
this situation the eating disorder is usually the main target of treatment.
Further help and information
Depression Alliance
212 Spitfire Studios, 63-71 Collier Street, London N1 9BE
Tel: 0845 123 23 20 Web: www.depressionalliance.org
Provide information, support and understanding to those who are affected by
depression.
Saneline
Tel: 0845 767 8000 Web: www.sane.org.uk
Saneline is a national out of hours telephone helpline providing information and
support for anyone affected by mental health problems including families and carers.
The British Association of Behavioural and Cognitive Psychotherapies
(BABCP)
Globe Centre, PO BOX 9, Accrington, BB5 2GD
Tel: 01254 875277 Web: www.babcp.com
They maintain a register of qualified practitioners. They also have a series of
pamphlets (available for a small charge) which provide information about frequently
encountered problems such as Anxiety, Depression, Schizophrenia, PTSD, General
Health, OCD, Agoraphobia, Learning Disability, Insomnia, Chronic Fatigue Syndrome,
Eating Disorders, Understanding CBT, Sexual Dysfunction, Chronic Pain, Conduct
Disorder, Bipolar Disorder, Social Phobia, Fear of Flying and Self Help.
Oxford Cognitive Therapy Centre (OCTC)
Based in the Oxford Psychology Department, part of Oxfordshire Mental Healthcare
NHS Trust.
Web: www.octc.co.uk
Their website gives details of how to order a number of educational and self-help
booklets with a CBT approach for conditions such as Depression, ObsessiveCompulsive Disorder, Bulimia Nervosa, Anorexia Nervosa, Anxiety, Panic, Phobias.
Self-help leaflets based on a CBT approach
For common mental health issues including depression. Writen by members of the
Newcastle, North Tyneside and Northumberland Mental Health NHS Trust.
Available on the web at: www.nnt.nhs.uk/mh/content.asp?PageName=selfhelp
Ultrasis
Web: www.ultrasis.com - produce interactive, computer based CBT programmes for
healthcare professionals, corporations and consumers.
© EMIS and PIP 2005
Updated: September 2005
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PRODIGY Validated
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