The dementia guide: English – full length – Alzheimer’s Society

Jim: I didn’t believe that I had it as bad
as it seemed. Hilary: I wasn’t surprised. I didn’t want
to particularly hear it, but was glad there was a reason for why I’d been struggling so
much at work. Rusty: I don’t think it worried me. Because
I think I felt perfectly okay. Kathryn Smith: Welcome to The dementia guide.
This guide is for anyone who has recently been told they have dementia. It will also
be useful to close family members and friends, as it includes information for people who
might be starting to take on a role as a carer. You will find information to help you understand
more about dementia as well as some practical things you can do to live well now and make
plans for the future. Being told that you have dementia can make
you feel a range of emotions. The news might come as a shock or for some people, it might
bring a sense of relief, as it provides and explanation for the problems they’ve been
having. It can also have a big impact on family and friends.
My family and I have personally been affected by dementia, with both my granddad and aunt
being diagnosed. I understand some of the difficulties and challenges people face in
coming to terms with the diagnosis. And figuring out how to make adjustments to everyday life
and access support. My family have taken great comfort in the information support they’ve
received, which has really helped to make the best choices for their care.
It is important to know that you aren’t alone. About 800,000 people in the UK have dementia.
It is possible to live well with dementia, and there is support available for you and
your family. If you can, talk to friends and family about how you’re feeling. Other people
need to understand what you’re going through. They might be finding things hard too. So
talking to them can help both you and them. There are also specialist health and social
care professionals you can talk to for support. You’ll find information about Alzheimer’s
Society Services later on in this guide. Alternatively you can phone our National Dementia Helpline
on 0300 222 1122. Please take your time watching the various
sections of this guide. You will hear from a range of people, including health and social
care professionals and people who are living with dementia and their close family. It is
possible to live well with dementia and you don’t have to face it alone.
Brenda: We’re a strong couple together. We’re very positive in everything we try to do.
We were absolutely devastated. Ann: For me it was a relief really because
I felt once he was diagnosed it was just good to know that there was a reason for it. I
don’t think he found it so much of a relief because I don’t think he really believed there
was much wrong with his memory. Hilary: A lot of people say, ‘what’s the
point in having a diagnosis if there’s no cure?’ And it does make you wonder, but
for me yes I’m glad I got the diagnosis. At least with the diagnosis you can make – well
you can try and make plans for what you’re going to do for the next however long you’ve
got. Dan Harwood: Dementia is an overall term for
a range of conditions. It isn’t just one specific disease. Most people have heard of Alzheimer’s
disease which is just one type of dementia. Despite what many people think, dementia is
not a normal part of ageing. Dementia occurs when the brain is affected by disease.
Dementia affects everyone differently and can cause a wide range of symptoms. These
can include problems with memory, thinking, concentration, and language. People may become
confused or struggle with how they see things. Dementia can also cause changes in mood or
emotions and affect how someone behaves. Unfortunately, dementia is progressive and symptoms will
get worse over time. There are over 100 types of dementia. The
most common are Alzheimer’s disease and vascular dementia. Sometimes, people have a combination
of both, which is called mixed dementia. Less common types of dementia are dementia with
Lewy bodies and frontotemporal dementia. At the moment, scientists don’t know why some
people get dementia. It’s known that ageing, genes, health and lifestyle all play a part.
There are 800,000 people living with dementia in the UK. The chance of developing it increases
rapidly with age. One in 14 people over 65 years of age and one in 6 people over 80 has
dementia. So most people with dementia are older, but dementia does also affect younger
people of working age. People who are diagnosed with dementia who are under 65 are said to
have early onset or young onset dementia. Peter: Well I can remember it quite distinctly.
Because Hilary came home and I could see in her face there was something wrong. I said
to her, ‘what’s wrong?’ She said, ‘I might as well tell you, I’ve got Alzheimer’s’.
Hilary: Looking back – I can go back 15 years – and see things starting to change.
But not to a level where it bothered me. The key thing that made me go back to the doctor
when I got the diagnosis last year was I’d had a meeting – a pretty intensive meeting.
It was a one to one meeting with somebody I hadn’t met before. A few weeks later I was
at a conference and this person came up to me and said, ‘hello Hilary how are you?’
And I would have sworn I had never met that person before. I had – I just didn’t recognise
him. That freaked me out a fair bit, having sat opposite somebody for two hours having
an intense conversation with them and then not recognising them just a couple of weeks
later. That was what finally prompted me to go back last year.
And as a result of the tests and the brain scan I got the diagnosis of early-onset Alzheimer’s.
Dan Harwood: To find out more about dementia, visit
Rusty: You can live your life with the treatment you get. I suppose the drugs that they give
us are obviously doing us good. I know I’m taking medicine but I just don’t think about
it. I think it must be helpful because I really don’t have too many worries about it.
Dan Harwood: There is currently no known cure for dementia, although there is lots of research
going on to find one. However, there are drugs that will help to treat some of the symptoms
of dementia or stop them progressing for a while. This depends on what type of dementia
someone has. People have Alzheimer’s disease or mixed dementia,
where Alzheimer’s is the main cause are usually offered one of four drugs – donepezil, rivastigmine,
galantamine or memantine. These are widely known by the brand names, Aricept, Exelon,
Reminyl and Ebixa but there are others. These drugs all help to tackle the physical changes
in the brain that cause dementia. The first three, donepezil, rivastigmine and
galantamine are usually prescribed to people who have mild to moderate Alzheimer’s disease
or mixed dementia. Some people find these drugs lessen their symptoms for a while. Benefits
can include improvements in motivation, anxiety levels, confidence, daily living, memory and
thinking. These drugs will initially be prescribed by a specialist, such as a consultant at the
memory clinic. If one of these three drugs causes problematic
side effects, it is possible to switch and try one of the others. People who have moderate
Alzheimer’s disease but can’t take any of the three drugs we’ve just talked about, perhaps
because of side effects, might be offered memantine, known as the brand name Ebixa.
It’s also become more common to be offered memantine in the later stages of Alzheimer’s
disease when symptoms become severe. The benefits of memantine are that it can
temporarily slow down the progression of symptoms in people in the middle and later stages of
Alzheimer’s disease. It may also help with agitation or aggressive behaviour which are
more common in more advanced dementia. The last four drugs I’ve just described that
are used for Alzheimer’s disease aren’t effective for people with vascular dementia. They are
only given to people with vascular dementia when this is part of a mixed dementia with
Alzheimer’s disease. It may be possible to slow down the progression of vascular dementia
by taking drugs that treat the underlying conditions. So the GP will often prescribe
drugs for people with vascular dementia who are at risk of having a stroke or who have
high blood pressure, high cholesterol, diabetes or heart problems. In many cases, the person
will already be taking some of these medicines. If they are experiencing distressing symptoms
such as hallucinations, which is where people see things that aren’t there, or delusions,
which is when they believe things that aren’t true, someone with dementia with Lewy bodies
might benefit from one of the three anti-Alzheimer’s drugs, donepezil, rivastigmine or galantamine.
In frontotemporal dementia, the anti-Alzheimer’s drugs haven’t been shown to offer any benefits
and may even be harmful. Because of this, they shouldn’t be prescribed. It’s common
for people with behavioural variant frontotemporal dementia to be prescribed anti-depressant
medication. This can help to reduce some of the inappropriate obsessive or compulsive
behaviours that are common symptoms of frontotemporal dementia.
As with lots of medication, drugs to treat dementia can cause some side effects. For
example, donepezil can cause nausea or diarrhoea. For more information on side effects, talk
to your GP. Drugs are not the only way to treat or manage
the symptoms of dementia. There are many other things that can help people to live well.
Talking therapies, such as counselling or psychotherapy give people the chance to speak
in confidence to a qualified professional about problems or issues that might be bothering
them. They might help you to come to terms with the diagnosis and identify ways to live
well with dementia. They may also help with symptoms of depression or anxiety. Talking
therapies typically involve regular sessions with a therapist, either one to one or sometimes
in a group. They can be face to face or over the phone.
Some people will just have one session while the others will have therapy that continues
for many months. Alongside talking therapies there are other non-drug approaches that may
be helpful as dementia progresses. Some of the more commonly used ones are reminiscence
therapy and life story work and cognitive stimulation therapy.
Reminiscence work involves talking about things from the past using prompts such as photos,
familiar objects or music. It can be one to one or in a group. Life story work is usually
shared between the person with dementia and a family member, friend or support worker.
A scrap book or photo album is used to record details of the person’s life. These techniques
particularly when done one on one can improve mood, wellbeing and some mental or cognitive
abilities such as memory. At the same time, they can help others to
focus on the person rather than their dementia. The services available and how to be referred
to one of them can vary around the country. Ask your GP, memory service or local Alzheimer’s
Society for details of what is available in your local area.
Another non-drug option for people with dementia is complementary therapy. These therapies
are outside of conventional medicine and are used to treat or prevent illness and promote
health and wellbeing. Complementary therapy should be used alongside and not instead of
conventional medicines. Anyone thinking about trying these therapies should tell their GP.
Some examples of therapies that may help people with dementia are massage, aromatherapy, bright
light therapy where you sit in front of a light box, and music therapy.
Ann: I think I worry more about how Rusty’s feeling in as much as he gets a bit depressed
with himself. I think that’s probably my biggest worry. I think the fact that he worries about
he can’t do things like he used to. Like he gets in a muddle if he tries to change plugs
and he can’t get the television to work and things that he’s always been able to do. So
he gets a bit depressed about that side of it.
Dan Harwood: It’s quite common for people with dementia to experience depression or
anxiety, especially in the early stages. People who have vascular dementia or Parkinson’s
disease dementia are more likely to experience it than people with other types of dementia.
There are both drug and non-drug treatments that can be used for depression and anxiety.
Anti-depressants work by correcting the level of some chemicals in the brain. But research
has shown that common anti-depressants don’t work as well for depression in people with
dementia as they do for people that don’t have dementia.
It can take several weeks to notice the benefits of taking an anti-depressant. Many people
experience some side effects to begin with, but these usually lessen after a week or two.
There are other ways to treat depression that don’t involve taking drugs. These include
talking therapies such as counselling, reminiscence activities and life story work. Other simple
things that can help with depression and anxiety include keeping active, doing activities that
you enjoy, and talking to friends and family. Eating a healthy diet and not having too much
alcohol or caffeine can also help. To find out more about treatments for dementia,
visit Hilary: We live for today don’t we and enjoy
it. And enjoy it. Jim: If life is still interesting then the
problem becomes diminished a bit. Brenda: It’s about stimulation, it’s about
people doing what they’ve always done. Maybe at a different level to what they’ve done
it, but actually still taking part seeing their friends, going out and about and following
the interests they’ve always had. They won’t have the same enthusiasm but none of us do
as we get older anyway. But it’s just managing it and keeping up to date, not letting a person
drop out. Alice Moody: Living with dementia is challenging
and you may feel angry or frustrated about what’s happening to you. Your plans for the
future might change, but dementia doesn’t change who you are as a person. A diagnosis
doesn’t mean that you need to stop doing the things that you enjoy, but you might have
to do them in a different way. It’s important to focus on the things you can and want to
do and try not to allow yourself to become isolated.
Keeping busy with activities you enjoy may help you to feel more confident.
Memory problems can be distressing. And it may affect your confidence. There are several
things you could try. Try keeping a notebook or a large week to view diary. Write down
in it things you want to remember like names or to do lists. Keep it by the kettle or phone,
somewhere you gravitate towards so you get used to referring to it. There are some technological
aids that people can find useful. These include calendar clocks which show the date and the
day of the week. Keeping one of these clocks next to the diary or weekly planner can help
you orientate yourself when checking appointments. If you find you forget where things are, try
putting labels or pictures on cupboards or drawers. This could help remind you what they
are. Or you could try keeping some things from the kitchen that you use most often,
like a cup, a plate and a set of cutlery out on a table visually.
You could also ask your pharmacist about putting your pills into a disposable box called a
dosette box, which has the days of the week marked. Locator devices can also be useful.
With these you attach a small electronic tag to things you often mislay like keys. You
can then click a button on a locator device to make the tag beep.
Having dementia can make accidents at home more likely. There are a few ideas you could
consider to help you stay safe. You could help prevent falls by making sure the house
is well lit and removing any trip hazards like rugs. You could have hand rails fitted
on the stairs or in the bathroom. Try using a personal alarm so you can alert people if
you fall. It’s always a good idea to install carbon
monoxide detectors and smoke alarms in the home. Try using timers for your plugs, lights
and heating systems to turn things on and off automatically. You could ask your local
fire service about a free home safety visit to make sure your home is as safe as it can
be. An occupational therapist can give advice
on items that could improve your safety and help you stay independent. You can ask your
GP or memory clinic to refer you to one. There can be lots of benefits to keeping as
active as possible physically, mentally, and socially. It’s great to meet people, it can
help you keep your skills and memory, boost your self-esteem, improve sleep and avoid
depression. Activities and occupation are important and make us who we are. We’re all
unique in what we enjoy. Some things may become more difficult and it may be tempting to give
up. However, there are often ways around things. Activities such as painting, cooking, cards
and puzzles woodwork and many others can be adapted or carried out slightly differently.
Carry on seeing family and friends, and try to have some fun. Try taking regular physical
exercise if you can. This can include things like walking and even gardening. Staying physically
healthy is also really important for people with dementia. Having dementia doesn’t mean
you should feel ill, depressed or anxious. So it’s important that you check with the
doctor if you are feeling unwell. Because other illnesses and infections can make you
more confused and forgetful. There are some things you can do to help with
your general health. Try to eat balanced meals and drink plenty of fluids. Take regular physical
exercise if you can and get enough sleep. If you smoke, have a think about stopping.
Have the flu vaccine each year and if you’re over 65 you can also ask your GP about the
pneumonia vaccine. Have regular check-ups with the GP and also have regular sight, hearing
and dental check-ups. If you find yourself regularly feeling low,
anxious or irritable, you may be depressed. This can be treated so talk to someone close
to you about it. Do see your GP if it continues or gets worse.
Ann: We live a perfectly normal life. We see friends and family and we go out for meals
in restaurants and we entertain people and go and be entertained by other people. So
we live a perfectly normal life. Alice Moody: To find out more about living
well with dementia, visit Hilary: I think we’ve pretty much taken care
of the business side of things. It’s really when do I stop working and, I mean I want
us to have some good times together while we still can. Well we will.
Ann: Very positive about the future because I think I know where to go for help now because
I’ve listened to what they’ve said. I understand what’s happening, I understand why things
happen. I understand that it’s a progressive but slowly progressive disease, so it’s not
going to happen overnight and it’s going to be slow. We’ve got lots of life in front of
us before it gets really bad. I’m very positive about the future.
Gary Vaux: There are lots of things you can do to make sure you get to choose how you
live now and in the future. Where possible, make plans as early as you can with a trusted
friend, family member or professional. It may get more difficult for you to make decisions
or choices about financial or legal matters as time goes on. Talk to your bank about what
they can do to help. This might include arranging what’s called a third party mandate. This
allows someone else to deal with your account. Consider setting up direct debits for regular
payments such as gas and electricity bills, if you haven’t done that already. If you find
it difficult to remember PINs for debit or credit cards, the bank can provide alternatives
such as a chip and signature card. It’s also important to make sure that all your essential
documents can be found easily. This includes bank accounts, mortgage or rent documents,
insurance policies, your will, tax, benefits and pension details.
People with dementia and their carers may be entitled to a range of benefits. Some are
means tested, which means that they depend on your income or savings. Accessing them
can seem complicated but there are people out there who can advise you on what to claim
for and help you complete the claim forms, which can seem long and detailed.
Help may be available from a social worker or a local welfare rights service, a Citizen’s
Advice Bureau or Age UK, as well as the Department for Social Development if you’re in Northern
Ireland. The website also provide useful information. For some benefits, the Department
for Work and Pensions can arrange for someone to visit you at home.
Chris Belcher: If you are able to, it will help to make decisions and plans so that your
future care and finances are handled in a way that reflects your wishes. It’s important
to have an up to date will, as this allows you to choose who inherits your money and
possessions. People with dementia can still make or change a will as long as they understand
the decision they’re making and the implications of any changes. It may be helpful to talk
to a solicitor for advice. Another way to help ensure your wishes are
carried out is to consider giving someone you trust a Power of Attorney. This means
that the attorney, often a spouse or adult son or daughter, can make certain decisions
on your behalf if you lose the ability to do this. The legal document to set this up
in England and Wales is called a Lasting Power of Attorney or LPA. There are two types of
LPA. One is for health and welfare. For decisions about medical treatment, for example. The
other is for property and affairs, which gives the attorney power over things like bank accounts,
bills or selling the house. In Northern Ireland the law is different.
To give someone Power of Attorney in Northern Ireland, you will need to make an Enduring
Power of Attorney or EPA. You can choose to make decisions about your
future care in a range of other ways too. Discussing views and preferences with family
and health or social care professionals is called advance care planning. Advance care
planning includes one or more of the following: putting in place a Lasting Power of Attorney
if you are in England and Wales, or an Enduring Power of Attorney in Northern Ireland, which
I’ve just talked about. Making an advance statement where you can
write down your priorities and preferences for the future. Making an advance decision
if you are in England and Wales, or an advance directive in Northern Ireland. This is a legal
document that allows you to refuse in advance, specific medical treatments or procedures
in case you become unable to decide for yourself. You may, for example, choose not to have your
heart or breathing restarted if they stop. Discussions about care at the end of life
can be very difficult for everyone involved. There shouldn’t be any pressure on you to
have these discussions. However, if you are thinking about advance care planning, it’s
important not to leave it too late. Having a diagnosis of dementia doesn’t necessarily
mean you have to stop driving straight away. But if you have a driving licence, the law
says you must inform the Driver and Vehicle Licencing Agency, the DVLA in Great Britain,
or the Driver and Vehicle Licencing Northern Ireland DVLNI promptly about your diagnosis.
You must also tell your car insurance company. The DVLA or DVLNI will request a report from
your doctor and might also ask you to take a driving assessment. They will use these
to decide whether you can continue to drive. Many people with dementia choose to stop driving
voluntarily. It’s best to stop if you feel less confident or become confused even on
familiar routes. As dementia progresses, there will be a time
when stopping driving becomes essential. Stopping driving can be difficult to adjust to, but
there can be some benefits. You might feel less stressed and you will save money on car
insurance and fuel costs. Taking control of alternative travel options, such as getting
a free bus pass, can help you with the transition. As can talking through how you feel with family
and friends. It is possible to continue working after a
diagnosis of dementia. Some people find working helps them to feel better physically and emotionally.
Others might feel that it is the best thing to do to stop. In some jobs, you are legally
obliged to tell your employer about your diagnosis, so you will need to check your contract. If
you drive as part of your job, you should let your employer know straight away.
You might feel anxious about telling your employer about your diagnosis. But doing so
will help to give you protection under the law. Once your employer knows, they must try
to make reasonable adjustments so you can keep working if you are able.
Hilary: My boss was very understanding. He’s basically said tell me what you can do, tell
me what you can’t do and we’ll see what we can do to make the job work for you. The
understanding of my colleagues has been incredibly helpful. It’s just made such a difference
because it’s out in the open and we can discuss any problems we’ve got.
Gary Vaux: You also might be eligible for a range of benefits. Depending on individual
circumstances, these can include things like personal independence payment, statutory sick
pay, employment and support allowance, housing benefit and council tax support. For people
with dementia who are of working age, and maybe for their carer’s too, some benefits
are changing. The new Universal credit will replace several means testing benefits, including
Income support, Income related Employment and support allowance and housing benefit.
For more information about Universal credit and how it will affect you, talk to a welfare
rights service or Citizen’s Advice Bureau. To find out more about planning ahead, visit Jim: We meet and we talk about it and I suppose
that itself is an advantage. Brenda: They take the micky out of each other
and crack jokes, they’re just so relaxed and comfortable with it.
Ann: I had great trouble getting him out to start with, he wouldn’t go anywhere. But now
that he’s joined all these different things he has this support worker from the Alzheimer’s
in Salisbury and she’s very good. She comes along once a week and she’ll get him to go
out. She takes him out to places and they’ll go and have a coffee in the garden centre
or something. So he gets more of an active life now than he was having.
Alex Clay: A diagnosis of dementia can be daunting and raises many questions about the
future. Asking for help can feel difficult, particularly if you’ve always been independent.
You might not feel you need it straight away but it can be useful to know that a wide range
of information and support is available to help you live well and stay independent for
as long as possible. The main sources of information and support
are the NHS, Social Services, private companies and charities and not -for-profit organisations.
To find services in your area, start by contacting your local memory service. Social Services
Department, GP, Alzheimer’s Society or Citizen’s Advice Bureau. Organisations such as Alzheimer’s
Society can support people with dementia, their families and carers in a range of ways.
These include dementia support workers, and support groups. Telephone helplines and information
materials. Lots of different healthcare professionals can support you too, such as, community nurses,
dieticians and occupational therapists who help people maintain everyday skills. Social
care professionals such as social workers and home carers can also offer advice.
If you need support at home, the first step is to ask social services for a community
care assessment. Sometimes called a care assessment or needs assessment. This aims to find ways
to help you maintain your independence and quality of life and will involve a discussion
between you and someone from social services. You might also be asked to fill in a questionnaire
which they can help you with if you need them to.
To arrange a community care assessment you or a relative or friend can contact social
services directly. Alternatively, a GP, consultant or other professional involved in your care
can make a referral. Assessment information and advice are always free. Social services
will appoint someone, usually a social worker, to be responsible for planning your care and
support. He or she will draw up a written care and support plan that looks at how they
can meet your needs. They may charge you for some services, or
they may cover the costs possibly in the form of a personal budget or direct payment. This
is money from the local authority that you use to pay for your care and support.
If you have been diagnosed with dementia and are in your 40s, 50s or early 60s, you will
have very different interests, care and support needs from someone diagnosed in their 80s
or 90s. For example, younger people are more likely to be working or have a partner who
is or have dependent children, or possibly dependent parents and still have a mortgage.
The number of services suitable for younger people is growing, but progress is slow and
services may not be available in your local area. Ask your memory clinic, your consultant,
GP, your local social services about support and services for younger people with dementia.
Contact Alzheimer’s Society about putting you, your family or carers in contact with
others in your local area, all in similar circumstances. Alzheimer’s Society online
discussion Talking Point, includes a section for younger people with dementia and their
carers which might also be useful. You might also find it helpful to visit websites
and subscribe to newsletters that support people with a particular type of dementia.
To find out more about services for people with dementia visit Caring for a supporting someone with dementia
can be stressful and at times upsetting. It can also be very rewarding. It is important
that you look after your own health and wellbeing and turn to others for support when you need
it. Ann: Alzheimer’s had a fantastic course for
carers which I did almost immediately after he was diagnosed. They did one on finance,
and one on legal stuff and then they had all sorts of different subjects. That was brilliant
because they taught you a lot but you could also ask questions. They also had a legal
advisor come along and talk to you and a financial person come along. Any questions that you
had were answered there. And if you didn’t have a question at the time you could always
go in a few weeks later and they’d find out for you. So it was absolutely brilliant.
Alex Clay: Everyone is different but you might find yourself experiencing a range of emotions
at different times. Try and take time to reflect on how you’re feeling and talk to someone
you trust. You might choose a professional, a friend, or family member or someone at a
carer support group. If you use the internet you could try an online discussion and support
forum like Talking Point. Getting support will make it easier for you to cope and better
for the person you care for. Sources of support for carers include family
and friends, health and social care professionals, memory services, carer support groups and
organisations such as Alzheimer’s Society. Looking after your own health and wellbeing
is vital when you’re a carer. It is important to make sure that you eat a balanced diet
and to make time for regular exercise and physical activity, even going for a walk can
help. Make sure you see your GP about your own health
on a regular basis. If you’re having problems sleeping, ask them for advice. If you feel
sad or anxious a lot of the time, talk to them about it as early as possible as these
could be signs of depression. Try to make sure you have some regular time to relax or
do something just for yourself. This can have a big impact on your wellbeing. Try to get
out regularly to meet friends. If possible, consider an outing or short break which can
relieve stress and leave you feeling refreshed. Find out about day care or respite support
for the person you care for. So that you can take time out knowing they are well looked
after. Jim: It’s a help to anybody with any problem.
You’ve got to realise what they are like as people haven’t you? So one line of help will
be more beneficial say to you, than it would to our friend there.
Alex Clay: Much of how you care for the person will come naturally. You will probably know
the person the best and you shouldn’t underestimate the value you can bring to their care. It
is important to continue to see the person and not just their dementia. When you help
out, focus on what they can do rather than on what they can’t. For example, lay clothes
out for someone to dress themselves which will help to promote their independence. They
may find it hard to remember or concentrate on things. So try to be flexible, tolerant
and patient. Allow extra time to do things. Put yourself in their shoes. Try to understand
how they might be feeling and how they might want to be cared for. Include them in conversations
and activities as much as possible. And make sure they have meaningful things to do. From
every day chores to leisure activities or socialising. Find things to do together if
you can. Dementia will affect a person’s ability to communicate. In most types of dementia
people will at times struggle to find the right words or follow a conversation. This
can be upsetting and frustrating for both you as a carer and the person with dementia.
Ensure that you make eye contact and listen as carefully as you can. Notice your body
language and think about how you use gestures, facial expressions and touch. Try to speak
clearly and if you aren’t being understood, use simpler words or explain things differently.
Bear in mind that other things and not just dementia can affect communication. Like hearing
or eyesight problems, pain or side effects of medication. If it feels right, it can sometimes
help to deal with misunderstandings and mistakes using humour. But you will need to judge how
the person responds to this. At times people with dementia behave differently
from how they used to. Some behaviours can be particularly unusual or challenging. Behaviours
which might seem unusual include asking the same question, or repeating an action over
and over, restlessness like pacing or fidgeting, lack of inhibition, such as socially inappropriate
behaviour in public, and thinking someone has taken something belonging to them when
they’ve actually mislaid it. More challenging behaviours include the person
becoming very agitated or shouting out. Perhaps in a response to a hallucination. The person
may also be physically or verbally aggressive. While it can be very difficult, it’s best
to deal with any potentially tense situations as calmly as you can. Keep in mind that even
where behaviour appears to be targeted at you, this may be just because you are there.
Symptoms might be caused by a curable health problem such as pain, or discomfort due to
constipation or an infection. See your GP if you suspect this might be the cause.
Sometimes the behaviour is really the person trying to communicate an unmet need. For example,
that they are bored or frustrated. If problematic behaviour persists or causes distress, seek
advice and support from your GP, memory service, community mental health nurse or Admiral Nurse
who are mental health nurses who specialise in dementia.
If the behaviour persists and you are not in contact with a dementia specialist, ask
for a referral. Sometimes the doctor might suggest medication, this may be one of the
drugs mentioned in the treatments film. If these do not help your doctor may recommend
an anti-psychotic drug. If so, talk to the doctor about the benefits and risks. These
drugs don’t work for everyone and can have serious side effects. To find out more about
support for carers, visit Alzheimer’s Society is the UK’s leading support
and research charity for people with dementia, their families and carers. We provide a range
of services and resources to support people affected by dementia. We have national services
that are available wherever you live in England, Wales and Northern Ireland. These include
the National Dementia Helpline, Talking Point, an online discussion forum, and our range
of information resources for people affected by dementia, as well as health and social
care professionals. We also offer services locally. These vary
depending on where you live and where funding is available. Services include Dementia Advisers,
dementia support workers, Dementia Cafés, Singing for the Brain activities, support
groups for people with dementia and support groups for carers. Also available are advocacy
services, day care and home care and the carer information and support programme. To find
out more about our services, please phone the National Dementia Helpline on 0300 222
1122 or visit Voiceover: Next steps checklist. This is a
list of things you can do after a diagnosis of dementia that will help you to live well
now and make plans for the future. Understand more about your diagnosis. For
example, the type of dementia you have and what your drugs are for, if prescribed. Talk
to others about how you’re feeling and ask your GP if there are any therapies or activities
that could help you. Try some methods to help you cope with memory loss. Introduce exercise
to your daily routine and review your diet to make sure it’s balanced. Organise regular
check-ups with your GP, dentist, optician and chiropodist. Arrange a benefits check
for you and your carer. Write or update your will and appoint an Attorney.
Tell the DVLA or DVLNI and your car insurer about your diagnosis, if driving. Ask social
services for a Community care assessment and a Carer’s assessment. Get in touch with
Alzheimer’s Society to find out about local services for you and your carer. To find out
more about The dementia guide, visit Useful organisations.
Alzheimer’s Society National Dementia Helpline. Telephone 0300 222 1122. Email [email protected]
Talking Point online discussion forum. Visit
Citizens Advice Bureau (CAB). Visit or
Department for Work and Pensions. Visit or
NHS Choices. Visit Office of Public Guardian and Court of Protection.
Telephone 0300 456 0300 or email [email protected] Or visit
Solicitors for the Elderly. Telephone 0844 5676173 for help finding a solicitor. Or email
[email protected] Or visit
To find out more about useful organisations, visit

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