February 2011 Issue #56

Hello and welcome to this almost Spring, snow-drops and crocuses are out, some days
it doesn’t rain, edition of the Star Wards newsletter. This one focuses on elderly
wards, with a bias towards those for patients with dementia and a random rather than
comprehensive approach to this vast subject. I recently visited two excellent elderly
wards at my local hospital, St Ann’s in Tottenham, and was yet again struck by what an
exceptionally challenging environment it is, for patients, staff and visitors. Staff do
the most extraordinarily heroic, empathetic, skilled, caring and tenacious job in
managing to keep wards feeling alert and purposeful when so many of their patients’
default state is asleep. Then there are all the additional complications of
communication, autonomy, angst-ridden relatives, physical care, end of life…..

The ultimate 92 year old. The ultimate everything. May Nelson Mandela have many healthy years ahead of him.

The highest my aspirations for ancienthood get are:

(I know. Very wrong. The fondant lettering’s font should be much

bigger.)

Although the articles in this edition are specific to elderly wards, as with all great
inpatient care, indeed most things in life, there are valuable ideas which can be
adapted for all patient groups.

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Anyway, it is so demanding and complex working on an elderly ward, that we’re really
keen to make any contribution which can help. So we’re thrilled to be able to

announce
a new partnership with the remarkable daily reminiscence newspaper

The Daily Sparkle.

I can’t emphasise enough just what a high quality, stimulating, accessible, practical
resource this is. The wonderful Chris Harding from The Daily Sparkle has generously
offered to make this available
FREE, EVERY SINGLE DAY
to Star Wards’ members. (The usual, highly reasonable cost is £59 a month.) Huge
thanks to Chris and the Sparkle team.

To access your Daily Sparkle, just go to:

http://www.dailysparkle.co.uk/starwards

The one requirement, as Daily Sparkle is a commercial enterprise, is that you don’t
pass on this link, or the editions, to anyone outside your Trust. Thanks! There’s a great
introduction to the newspaper by Chris on page 3.

As always, we’d welcome (actually ecstatic about receiving) your examples of working
with elderly patients with or without dementia, and indeed patients without elderliness
and/or early dementia.

Love and

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Here’s Chris from the Daily Sparkle (that’s not him in the photo.)

Hi there,

I’m delighted to have this opportunity to support the Star Wards project and all the
wonderful people who are taking care of older people in need. I take my hat off to all
of you who share such love and care for people who many in society avoid and ignore.

The Daily Sparkle - let me tell you a little about it. Well there’s a daily version and a
weekly one ( The Weekly Sparkle - original eh?) The Sparkles are reminiscence
newspapers which have been specifically crafted and written for frail older people and
people with dementia ( mild to mid-stage.)

The majority of activities and therapeutic work undertaken with older people and
people with dementia boils down to reminiscence. Whether it is in the guise of music
and songs, quizzes, bingo, or discussion groups, the nub of the activity is reminiscence.
There are hundreds of research projects documenting the effectiveness of
reminiscence as a therapeutic tool. Indeed it is widely agreed that reminiscence is the
most effective therapeutic tool in use today.

How reminiscence generates the positive outcomes that it does is described in many
different ways according to the scientific bent of the researcher. However, most
seem to agree that older people benefit because they are reminded of times when
they felt stronger, more important and more significant than they normally feel in
their current state. One memory then triggers other memories associated with states
of higher self-esteem.

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Since their launch a year ago The Sparkles have been a big success. They have been
successfully field tested by The Alzheimers Society. They have won awards, including
‘Best Social Media‘ from the Association of Social Care Communicators (ASCC) and
have received high praise in a number of industry press magazines and websites.

The Sparkles have the potential to be a core activity in Wards for older people and to
be used as a fresh resource every single day. They are flexible and versatile - use
anytime, anywhere, by anyone, and for those who work with them they can be used in a
wide variety of ways.

A Step-by-Step guide is provided to enable Occupational Therapists, nurses and

carers to get off to a good start in using The Sparkles. Additionally, Carers' Notes
are produced with each edition enabling users to better understand the content ( and
the lives and times of the people they are caring for ) as well as suggesting
appropriate prompts and questions. All this with the aim of engaging the ‘patient’ and
stimulating conversation.
Letters Column - Encourages contribution, interaction and a sense of community
Large, Clear Fonts - Making it easy to read, even when used alone
Carers’ Notes - Background info and questions to support staff interaction. Very
useful for care staff
Stimulating Questions - Designed to prompt reminiscence
Quizzes - A great support for mental fitness. The quizzes can also be used to start
off facilitated reminiscence sessions
Evocative Images - Triggering personal memories

If you’re reading this online, you can click here to read a recent copy of the Daily
Sparkle. Or in a quiet moment(?!) you can visit www.dailysparkle.co.uk/recent.

To access your Daily Sparkle, just go to:

www.dailysparkle.co.uk/starwards

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Ramsey Ward, St Martin’s Hospital, Canterbury –
from Star Wards newsletter #45

The ward is inspiredly set up with a very strong reminiscence theme. Peter, the
extraordinary ward manager, told me that the elderly patients with dementia feel
they’re living in the past and so the surroundings he and his team have created are
familiar and reassuring for them.

There are beautiful pictures everywhere, from the entrance to the ward right through
to the magnificent seascape mural in the bathroom. The photo shows part of the
mural, which the nursing team not only painted but meticulously cut out the birds,
penguins etc for and arranged these on the scene. (The whole mural was then glazed to
meet infection control requirements.)

The two main ward design themes are celluloid stars of the past and planes. There are
wonderful strips of pictures of planes, which the staff resourcefully acquired from
the nearby Manston airforce museum. (Particularly enjoyed by the male patients.) And
for the ladies, a truly remarkable border stretching right round the (big!) ward, which
the staff created frame by frame, including punching out hundreds of the little holes
that provide film-strip authenticity. And the team even did the fundraising to be able
to buy all the decorations.

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The reminiscence concept is thoughtfully applied in a way that is highly practical as
well as attractive and stylish. For example, rather than bedrooms being called 1, 2 etc,
they’re named after and feature photos of familiar celebrities eg Charlie Chaplin and
Marilyn Monroe. (How amazing to be in hospital, in somewhere as usually stigmatised as
a ward for elderly people with organic impairment, and be staying in the Marilyn
Monroe room!) And there is a superb reminiscence room, shown in the photo above,
with period details right down to the phone and radio.

The fantastic detail goes right through to the signage. Rather than dull, institutional
NHS signs on doors, to accompany the photos of the eponymous star, the staff
painted the names onto the wall with stylish calligraphy. You can see an example of this
in the photo above of Peter and the Welcome to Ramsey Ward lettering.

It is of course possible (although unlikely!) to have created wonderful surroundings for

patients but for daily life to be sterile or untherapeutic. But not on Ramsey Ward!
Sleeping is obviously a very big occupation for elderly people with dementia, but those
patients who were awake were absorbed in activity with staff and visitors. A game of
giant dominoes was underway, and two patients were putting together large, chunky,
colourful Duplo pieces e whole issue of ‘age appropriate’ activities is complicated but
my take is that we should use the most age-appropriate resources that meet
individuals’ needs. If this is a teenager listening to Eminem, great. And if it’s an elderly
person with highly impaired cognition enjoying playing with Duplo, great. (While I write
this, my 8 year old learning disabled foster son Matthew is playing simultaneously with
his games console and a talking doll.)

You won’t be surprised to learn that Peter and team have put similar energy into
creating a lovely garden. For example, they managed to get B&Q to donate garden
furniture through their wildlife scheme, by pointing out that this would enable
patients to enjoy the visiting rabbits, partridges and birds.

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The Eden Alternative®
Miriam Stermer is the administrator of The Methodist Home, a Continuing Care
Retirement Community in Charlotte, North Carolina

The founder of the Eden Alternative, Dr. William Thomas has said that there are
three plagues in nursing homes that have never been addressed: loneliness, boredom
and helplessness. To counteract these, residents need companionship, variety and a
chance to feel needed. … We wanted to bring life back into the lives of the residents,
using the Eden strategies of exposing them to large numbers of animals, plants and
children. In the spring of 1997, we began introducing the animals, plants and children
into the home. We now have five dogs and six cats that roam free on our three floors,
along with finches, canaries, parakeets and an aquarium. Aviaries on each floor were
built by the grounds manager in his free time, and residents have canaries in their
rooms. In the afternoon, cockatiels and turtledoves visit via birdmobile. We've found
that pet allergies are not a problem, probably because of our large spaces and
efficient air-cleaning systems, as found in most nursing homes, as well as to
exceptional housekeeping standards. We adhere, of course, to requirements that
prohibit the animals from entering kitchens and dining areas.

To give our residents contact with a younger generation, we have a child care center
on campus, and residents interact with the little ones three times a week. To get older
children involved, a Girl Scout troop and a Brownie troop meet here, and many of the
badges they earn involve interacting with our residents. High schoolers come in as part
of a community service program to visit with and read to residents, run their errands
and assist staff. Even when outside groups come for something like a carol sing,
children are encouraged to begin interacting with residents by playing ball and working
puzzles.

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Since no Eden is complete without a garden, we have a lot of greenery in the facility.
There is an outdoor courtyard where residents can grow tomatoes, cucumbers and
peppers for our tables, as well as flowers for our centerpieces. They can also raise
cuttings in their rooms, and we have special horticulture projects, such as strawberry
pots. We are also starting a memory garden in remembrance of residents and staff
who have died (an idea I borrowed from somewhere else). It makes our place more of a
home.

The cost of edenizing requires more a change of heart than change in the pocketbook.
No additional employees have been hired, and costs have been minimal compared to the
facility's overall budget. Most of the funding for things like supplies comes out of our
operating budget. We have also had to pay for a dog run and a watering system for the
overhead plants. Many supplies and services have been donated, with pet rescue groups
donating food and medication, the Metrolina Caged Bird Society donating birds, local
vets giving us discounts, and former police K-9 trainers volunteering to help provide
obedience training for dogs.

Unlike a scheduled program or one-time-only project, the whole concept of Eden is to

reintroduce the idea of spontaneity, challenge and a variety of experiences - life as a
whole - to residents. The best thing about Eden is that it is a total redirection of
care, and one that never ends. There is no plateau. We are always evolving, always
edenizing. Our teams look for problems and ways to solve them; our empowered staff
members look at resident needs and how to meet them. They continually do this
through projects large and small: from slipper socks for dementia patients, to wheeled
storage areas in rooms to reduce clutter, to programs for improving overall
communications. This approach has demanded a lot of education and training for our
staff, for the residents and families, and for the community.

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Pets
Pets as therapy, companions, joy-bringers, motivators, exercisers.... We can't stress
enough what a disproportionate impact it makes to patients to have contact with
animals, including providing great opportunities for activity and conversation with their
visitors.

Circle Tail is an American charity that operates a service dog training school. Marlys
Staley, Circle Tail director, says that the dogs chosen for each nursing home or
retirement center must have low working drives and high tolerance for human contact.
“What we noticed was that Link was pleasant to everyone, did not bond tightly to one
person, and had a low desire to work. His main goals in life were to sleep, (get) a little
light exercise, sleep, be petted and groomed, sleep. Since his energy level and desire
to work were so low but his personality so sweet, we thought he would make a great
facility dog.”

Sounds familiar:

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Can pigs and goats help people with dementia?

By Sharmini Selvarajah Reporter, BBC Radio 4's You and Yours

http://www.bbc.co.uk/news/health-11734324

A care home in Birmingham is using pigs, chickens, goats and other animals to improve
the lives of its residents. Neville Williams House is taking part in a three-year
research project looking at how interaction with animals can benefit people with
dementia.
NHS guidelines include animal-assisted therapy as one form of intervention which
should be available to people with dementia suffering from depression or anxiety.

"It was a leap of faith," says Marcus Fellows, the chief executive of the home. "There
were fears about health and safety, illness, disease. People were saying, if you have
pigs then they're going to bite people." But after talking to staff at a local nature
centre and consulting carers and residents, Mr Fellows decided to go ahead with
keeping a range of outdoor animals on the premises.

At the moment the home has two goats, one pig, two rabbits, a guinea pig, ducks,
chickens and an aviary of birds. The animals all live in the garden where residents are
free to visit them whenever they like. The smaller animals and even the goats are also
taken indoors so residents can interact with them whatever the weather.

It costs £1,000 a year to feed the animals, which were all either donated or
purchased with money given to the home specifically for this purpose. So far there
have not been any vets' bills and insurance is covered by the home's existing policy.

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Professor Alison Bowes from the University of Stirling is leading a research project
which will be focusing on the work done at Neville Williams House.
"It's aiming to identify best practice. We're looking at the quality of life of people
with dementia and their family members," she says. The project will also be analysing
previous research on the effects of animal interventions. Jane Fossey, a clinical
psychologist and deputy chairman of The Society of Companion Animal Studies, says
there is a lot of small-scale and anecdotal evidence that animals can improve the
quality of life of people with dementia.

One study found that having a fish tank present increases the nutritional intake of
people with dementia and another found that companion animals reduce verbal
aggression and anxiety in people with Alzheimer's disease.

Back at Neville Williams House the residents are delighted with their new companions.
Flo Condon, 85, is a day visitor there. She says everyone loves the animals and fights
over who will get to care for them. "You always have something in your pocket for
them when nobody's looking," she says.

Christine Adams, whose mother is a full-time resident at the home, says she has
noticed a difference since the animals have been around. "It's helped her with her
speech and you can see that she becomes much more animated when she's near the
animals." Mrs Adams says having the animals around is also useful when her children
and grandchildren visit. "When we go out into the garden it gives us a lot to talk about
because in the home you get a bit limited about what you can talk about. It's like
having a family outing but still on the premises."

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Kelly

Unfortunately there are loads of genuine, bureaucratic and plain stupid complications
about getting pets onto wards. So I was fascinated to hear on Radio 4 about the
therapeutic benefits of Paro, a $6,000 interactive Japanese seal:

http://bbc.in/parodog (If you want to go straight to this feature, it starts at 19

minutes.) Star Wards’, and your wards’, budgets don’t exactly stretch to $6,000 toy
seals, but the Janner household has now been joined by a £99 doggy equivalent –
Furreal’s Biscuit. (Or to endow him with his full name: FurReal Biscuit My Lovin' Pup-
Janner.) A rescue dog, saved from the ignominy of rejection through Ebay. And
renamed Kelly in gratitude to the LankellyChase Foundation who in addition to being
one of our main, much loved, funders, chose Star Wards as their Christmas charity.

Our youtube channel (www.youtube.com/starwardschannel) has a video of my older

foster son, Eddie, playing with Kelly. http://bit.ly/wardskelly. Buddy also makes a
guest star appearance. Kelly really is remarkable. He’s ridiculously lifelike, not just
size-wise but by responding to voice commands, and spontaneously doing irresistible
things like wagging his tail, putting his head to one side (more Princess Di than Buddy),
whimpering (more Buddy than Di) and panting (I'll leave it there.)

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I was astonished that stroking and cuddling Kelly is such a similar experience to
messing around with Buddy. Then I remembered a term introduced to me by my
psychiatrist/therapist as a reframing of my reference to “emotional baggage”.
Emotional memories. Great term, great concept, which embraces positive as well as
tricky emotional resonances. So when Eddie and I are playing with Kelly, warm feelings
are evoked from our experiences and memories of being with Buddy and other dogs.

And funnily enough, neither Kelly nor Buddy reliably respond when asked to do things!
We haven’t quite got the hang of giving Kelly ‘voice commands’, and Buddy has all too
effectively accomplished ignoring most requests. (There’s a clip on the ‘editing room
floor’ of me calling Buddy over and her turning round and trotting out of the door!
She’s so got her own agenda.) Eddie and I found that it’s almost more delightful and
funny when Kelly, like Buddy, doesn’t respond to what we’ve asked. We admire their
independence!)

It’s interesting how fluidly Eddie (and I) move between playing with Kelly and with
Buddy, because it really does feel at the time similarly pleasurable.

Become a Biscuit pioneer! Make your patients, visitors and colleagues very happy with
a social and recreational purchase whose benefits are second only to the invaluable
Wii. John Lewis are selling Biscuit for £75 which is a real bargain and something that
League of Friends may be happy to pay for. (But! Biscuit takes 6 huge, D batteries, so
rechargeable batteries and chargers are pretty essential. )

Derbyshire are going to pilot having Biscuit with dementia patients, and we’ll let you
know how that goes. Big thanks to Sue Stocks for, again, trailblazing. Please do let us
know if your ward gets its very own Biscuit and we’d love to have photos, videos,
anecdotes – and advice for how to get Biscuit, Kelly and Buddy responding to what
they're asked to do.

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Music
"Music can in such a simple way help to overcome these feelings of frustration and
humiliation. Music is the most effective and often the only way to stimulate a
response. It seems to reach into their very souls and unlocks that door behind which a
frightened, intimidated and humilated person hides. Life at times is just too awful to
face for most of them." Helena Muller, founder of Lost Chord, “an innovative charity
dedicated to improving the quality of life and wellbeing of those suffering with
dementia using interactive musical stimuli to increase their general awareness and self
esteem. “

There's a fabulous video from the Alzheimer's Society about the benefits gained by
members of a singing group for people with dementia: http://bit.ly/alzsocsing

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Music as a Tool to Improve Communications Skills in
Alzheimer’s Patients
From: http://www.parentgiving.com/elder-care/music-as-a-tool-to-improve-communications-
skills-in-alzheimers-patients/

The Alzheimer’s Association recognizes the enriching benefits of music therapy. Music
can stir long-term memories; and, best results may be obtained from music popular
during the patient’s youth. Some patients might respond well to rhythm-and-blues, or
to instrumental hymns and spiritual songs. Singing along, or swaying or clapping hands
with the music should be encouraged. Music therapy may awaken a desire to dance,
which can be therapeutic. A patient’s enjoyment is typically increased as they move or
sing with the music. Music therapy can also be linked to other memory-stirring
activities such as looking at photographs.

For people with Alzheimer’s disease and dementia, the body’s functions degenerate as
the brain’s functions deteriorate. Among the most affected are the five senses, but
the sense of hearing is usually the first to go. Before hearing finally shuts down, music
therapy can be a valuable therapeutic tool to promote interactive communication.
According to researchers M. Brotons and S.M. Kroger of the Willamette University
Psychology Department in Oregon, in their study on "The Impact of Music Therapy on
Language Functioning in Dementia," patients showed statistically significant
improvements in speech content and fluency after eight sessions of music therapy
combined with conversations.

Other researchers have reported on proven benefits to Alzheimer’s patients derived

from music therapy on aspects such as cognitive functions, social skills, and behavior
(including reduced agitation and behavioral problems). Music and music therapy are not
curative of Alzheimer’s and dementia, but the use of music therapy results in the
beneficial effects on dementia and Alzheimner’s symptoms. These benefits lead to an
enhanced quality of life for both the patient and his or her caregiver.

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Why music therapy works

For centuries, music has been known to calm people down and provide relief from
stress and tension. One possible explanation for its effects is found in a study by
researchers at the University of Miami’s School of Medicine in Florida, led by Dr.
Ardash Kumar. The study assessed how music therapy affected secretion levels of
five brain chemicals (melatonin, serotonin, norepinephrine, epinephrine, and prolactin)
in Alzheimer’s patients. After a month-long program (30 minutes a day, five days a
week), the team found that music therapy led to increased secretion levels of
melatonin, a hormone associated with mood regulation, lower aggression, reduced
depression and enhanced sleep. The higher melatonin levels persisted even six weeks
after music therapy sessions had stopped. Secretions of epinephrine and
norepinephrine rose immediately after music therapy sessions but did not remain for
long after the sessions had ceased. Music therapy did not influence secretions of
serotonin and prolactin.

The following extracts from an article in the Journal of Dementia Care (Research
Focus) make interesting reading: Singing as a Therapeutic Intervention in Dementia
Care

We recently performed the first analysis of MTC (Music Therapeutic Caregiving) with
a group of people in the later stages of dementia (Gotell, Brown & Ekman, submitted
for publication). The study took place in a 24-bed specialist dementia care unit in
Sweden. During the daily morning care routine, the caregiver assists the person with
personal care (washing, cleaning teeth, combing hair, dressing) in a private bathroom.
Three conditions were compared: no music (the control condition), background music
and caregiver singing to the person (music-therapeutic care giving). For this article, we
will leave aside our results with background music and focus on the singing
intervention.

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With no music and no singing – people demonstrated a familiar array of behavioural
problems associated with dementia and were generally confused about the activities
being performed. Some were highly aggressive and constantly pushed the caregiver
away; some were mute while others shrieked; people were generally resistant and non-
compliant. Caregivers made frequent use of verbal instructions and narrations in an
attempt to make their actions sensible to the person. Overall, there was little sense of
understanding, cooperation or mutuality in these interactions. In the singing condition
caregivers sang familiar folk or popular songs to the person with dementia while
performing the activities just described. An analysis of the verbal communication
showed striking differences compared with the control situation. Caregivers were not
merely singing the instructions they had spoken in the no-singing condition; they were
singing familiar old songs. As a result of this, the amount of verbal instructing and
narrating diminished significantly.

However, contrary to expectations, comprehension and cooperation increased

dramatically. There was much less aggression and resistance from people with
dementia, and disruptive screaming ceased. Equally important, people had a much
better sense of how to perform grooming activities on themselves, including brushing
the hair, shaving (for male patients), brushing the teeth, and even recognizing their
own image in the mirror. Caregiver singing seemed to make the world of the person
with dementia comprehensible.

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Dementia and language
alzheimers.org.uk/factsheets Factsheet 500

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. They may substitute an
incorrect word, or they 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 interpreting 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.

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General advice
· Listen carefully to what the person has to say.
· 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 their communication.
· Use physical contact to reassure the person.
· Show respect.

Listening skills
· Try to listen carefully to what the person is saying, and give them plenty of
encouragement.
· If they have difficulty finding the right word or finishing a sentence, ask them to
explain in a different way. Listen out for clues.
· If you find their speech hard to understand, use what you know about them to
interpret what they might be trying to say. But always check back with them 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

· 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.

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Using body language
· A person with dementia will read your body language. Agitated movements or a
tense facial expression may upset them, 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 them 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
· As the dementia progresses, the person will become less able to start a
conversation, so you may have to start taking the initiative.
· 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 them
enough time. If you try to hurry them, 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.

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Whose reality?
· 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
· 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
· 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 them as if they weren't there. But disregarding them 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:
· 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.

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Books

There are some very compelling reasons for helping elderly people with dementia enjoy
a range of books, from gorgeous coffee table photo books to stories written
specifically for this group.

Many Alzheimer’s Patients Find Comfort in Books

April 22, 2010, 9:00 am New York Times online

Familiar music can engage those with Alzheimer’s when almost nothing else can,
researchers have shown. Now it appears that books written for these patients may
have a similar effect.

Researchers have found in a number of studies that reading can improve a patient’s
quality of life. The meanings of written sentences can be understood by — and prompt
cogent responses from — even those who have difficulty handling verbal exchanges.
Caregivers may be surprised to learn that reading ability is not always destroyed by
Alzheimer’s. “All of my research demonstrates that people who were literate maintain
their ability to read until the end stages of dementia,” said Michelle S. Bourgeois, a
professor of speech and hearing science at Ohio State University.
At the earlier stages of Alzheimer’s disease, many literate patients may still enjoy
reading books themselves, said Dr. Barry Reisberg, a professor of psychiatry and
director of the Fisher Alzheimer’s program at New York University. Large-type
reading materials can be used to assist later-stage Alzheimer’s patients to continue
reading.

Even at later stages of the disease, many patients are engaged by books read to them.
Lydia Burdick, a businesswoman in New York, was able to get her mother to respond by
reading to her even at a relatively late stage of Alzheimer’s disease, although it had
long been hard to get through to her.
One afternoon she persuaded her mother to read a sentence — “I love to feel the
sunshine on my face” — and asked, “How does the sun feel?”
“Warm,” her mother said, and both women smiled.

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Books published for children and young adults may be easy to read, but they can be
off-putting for people with Alzheimer’s. “If they see something as being childish, you
have lost them,” Dr. Reisberg said. “It is not just reading anything,” Ms. Burdick said.
“It has to be personally relevant to the person, and the size of the print has to be big
enough for them to see it.” Suggestions for starting a conversation and appropriate
songs for each page are listed at the end of two of the books.

Dr. Peter V. Rabins, director of geriatric psychiatric programs at Johns Hopkins

School of Medicine, said, “Anything that helps make it easier for people to interact
produces benefits in both directions — the family member with the disease and the
caregiver. It gives the person with the disease a chance to interact with grandkids or
younger children,” he said. “It’s positive both ways.”

Pictures to Share is a charity which produces “illustrated books help the individual
with dementia, their families and carers enjoy time together.” They have an excellent
PowerPoint presentation about how books and pictures enhance the lives of people with
dementia:
http://www.picturestoshare.co.uk/media/documents/unfettering_the_imagination.pdf

And their guide for using their books includes some great tips about reading and
pictures in general.
http://www.picturestoshare.co.uk/media/documents/How_to_Use_Guide_new_v2.pdf

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Aromatherapy and Massage
Research funded by the Mental Health Foundation in 2000 highlighted the potential
benefits of aromatherapy, specifically the use of melissa officinalis, or lemon balm, in
the treatment of Alzheimer's disease. Researchers at Newcastle University's
Medicinal Plant Research Centre believe that lemon balm may help prevent the loss of
the key brain chemical acetylcholine. The loss of this chemical is one of the changes
associated with Alzheimer's. Lemon balm may then work in the same way as the first
generation of drugs for Alzheimer's disease, Aricept and Exelon.

This research suggests that aromatherapy may have a more specific role in the
treatment of Alzheimer's than aiding relaxation. In 2002, a paper by Alistair Burns in
the British Medical Journal added weight to the potential benefits of aromatherapy
for people with dementia, used as an alternative to neuroleptic drugs.

There is some evidence that aromatherapy - either alone or in combination with

massage - is effective in helping people with dementia to relax. One trial compared
aromatherapy and massage, aromatherapy and conversation, and massage only. It
found that excessive 'wandering' could be reduced by aromatherapy and massage in
combination.

Another study investigated lavender oil on a hospital ward, and showed a reduction in
agitated behaviour. The benefits of aromatherapy and massage and expressive
physical touch (which generally includes gentle massage) have also been reported,
although one review of a number of studies reported inconclusive findings.

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RCN Dementia Project
Dignity in dementia: transforming general hospital care

What are the issues?

Dementia is one of the most important issues we face as the population ages.
There are currently approximately 820,000 people with dementia living in the UK,
including 16,000 people under the age of 65. This figure is set to rise to approximately
2 million by 2033.

Improving the quality of care in general hospitals has been identified as a priority
within national dementia strategies. Up to 70 per cent of acute hospital beds are
occupied by older people, approximately 40 per cent of whom have dementia. However,
patients who have dementia experience many more complications and stay longer in
hospital than patients without dementia. It is also estimated that 30% of people will
die with dementia and many of these die in general hospital settings.

This poses a key challenge as acute general hospital settings are often not conducive
to the needs of people with dementia. As recent findings from the National Audit of
Dementia have identified significant difficulties with achieving good quality care for
people with dementia in hospitals, it is essential that this issue is addressed.

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What are we doing?

The RCN is leading a project, supported by the Department of Health, on the care of
people with dementia in general hospital settings and will be working collaboratively
with members and stakeholders from all regions to develop and disseminate this work.

We are keen to identify and gather evidence of best practice that promotes dignity
for people with dementia and improves understanding of dementia care in acute care
settings. This might include examples of practice which have either been in place for
some time or initiatives and innovations that have been implemented.

We are delighted that we have had over 500 responses to the survey so far, which
include some shining examples of how staff have really made a positive difference to
the care of people with dementia and their families in general hospital settings. It is
encouraging that despite recent reports which highlight where care is going wrong
such as the National Dementia Hospital Audit and the recent Health Ombudsman
report today, many people are motivated and keen to improve the experience of people
with dementia and their families. Caring for people with dementia in an acute care
environment can be extremely difficult as the environment and pace of care is often
not conducive to the care of people with dementia.

We will be using the survey responses to inform and develop guidance and best
practice for those working in these environments and seeking responses from people
with dementia and their carers to ensure that these initiatives are the right ones. We
will also be working collaboratively with other Royal Colleges, voluntary organisations
and the Department of Health to use the final guidance to help inform and influence
the way care is provided.

For more information including project updates: www.rcn.org.uk/dementia

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Resources

Organisations

Everyday Miracles (including The Daily Sparkle)

www.everydaymiracles.co.uk

NAPA - National Association for Providers of Activities for Older People.

www.napa-activities.co.uk

Alzheimer’s Society
www.alzheimers.org.uk

Pictures to Share
www.picturestoshare.co.uk

Eden Alternative
www.eden-alternative.co.uk

Pets as Therapy
www.petsastherapy.org

Thrive (gardening for disabled people)

www.thrive.org.uk

Music in Hospitals
www.music-in-hospitals.org.uk/

Lost Chord
www.lost-chord.org.uk

Age Exchange
www.age-exchange.org.uk

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Books, leaflets etc

The Alzheimer’s Society has an excellent series of factsheets about dementia (all
clickable on if you’re reading this on an Internet-connected PC), including:

· What is dementia?
· What is Alzheimer's disease?
· The later stages of dementia
· Complementary and alternative medicine and dementia
· Depression
· The brain and behaviour
· The progression of dementia
· Hallucinations in people with dementia
· Assistive technology
· Counselling: how can it help?
· Communicating
· Moving and walking about
· Coping with incontinence
· Keeping active and staying involved
· Grief and bereavement
· Dealing with aggressive behaviour
· Eating and drinking
· Understanding and respecting the person with dementia
· Unusual behaviour
· Care on a hospital ward

And NAPA sells publications about activities for older people eg:
Therapeutic Activities and Older People in Care Settings: T Perrin
Exercise For Older people - Training Pack
The Alzheimer's Book of Activities – S Knocker
The Woven Thread – S Gaspar
No Cook Cooking
Starting Out & Keeping It Up
Developing Team Spirit & Cooperation
Activities of Daily Living Planner - a book to record an individual’s likes/dislikes and
preferences.
All About Me. A booklet helping residents express individual preferences

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