Pat 168 Dementia Patient Booklet Final

Assessment, diagnosis, care
and support for people with

dementia and their carers
A booklet for people with dementia, friends, family members
and unpaid carers
Contents
Who is this booklet for? 1
What is this booklet about? 2
What is dementia? 4
How is dementia identifed and diagnosed? 5
What support can I expect after diagnosis? 14
How might I feel after a dementia diagnosis? 20
What support is available to manage distress? 24
What do I need to know about dementia, end-of-life care and dying? 28
Information for carers about grief 30
Where can I fnd out more information? 32
How are SIGN guidelines produced? 40
Acknowledgements
We would like to thank all the people with dementia and unpaid carers
who contributed to both the guideline and this booklet. Thanks also to the
third sector organisations who contributed to this work.
© Scottish Intercollegiate Guidelines Network
First published November 2023
This document is licensed under the Creative Commons Attribution-

Noncommercial-NoDerivatives 4.0 International Licence. This allows
for the copy and redistribution of this document as long as SIGN is
fully acknowledged and given credit. The material must not be remixed,
transformed or built upon in any way. To view a copy of this licence,
visit https://creativecommons.org/licenses/by-nc-nd/4.0/
Who is this booklet for?
This information is for people who:
• have been diagnosed with dementia
• may be going through assessment for dementia
• are family members, friends, unpaid carers and care partners who
are caring now, or could be caring in the future, for a person who has
been diagnosed with dementia.
It applies to adults living with dementia, including those with young

onset dementia.
Your carer may not think of themselves as a carer and may

see themselves as your wife, husband, son or daughter. An unpaid
carer or care partner is anyone who supports a friend, family
member or neighbour because of old age, physical or mental
illness, disability or an addiction.
Nobody chooses to be a carer. I did

it not as an obligation, but because of
the love I had for my mum. It was the
most natural thing to do and was an
absolute honour too.
(Carer of person with dementia)
Details of further information and advice that may be useful to you at

different stages of your dementia journey can be found on page 32.
Assessment, diagnosis, care and support for people with dementia and their carers 1
What is this booklet about?
This booklet shares recommendations from a clinical guideline

about dementia produced by the Scottish Intercollegiate Guidelines
Network (SIGN).
The clinical guideline is based on what we know from current medical

research. It also gives advice based on the opinion of healthcare
professionals who are trained on how best to manage your care.
If you would like to see the guideline, please visit www.sign.ac.uk
On page 40 you can fnd out how we produce guidelines.
The booklet will cover: The booklet does not cover:
• Assessment for dementia • Childhood dementia, because this

is very rare
• Diagnosis
• Treatment, because the guideline
• Support after diagnosis
development group agree with
the guidance on treatment
provided in the National Institute
for Health and Care Excellence (NICE)
dementia guideline (NICE) (2018),
Dementia: assessment, management
and support for people living with
dementia and their carers
The guideline encourages all health and social care professionals to

adopt person-centred care and see people living with dementia and
unpaid carers as individuals in their own right.
It is important to be aware that each health board is responsible

for meeting the needs of its own area. This may mean that what’s
available to you in one area may differ from what’s available to
someone living in a different health board area. Recommendations
may depend on what’s available in each health board.
What is this booklet about? continued
There are two different types of recommendations in this booklet.
Recommendation Recommendation
based on the research evidence based on clinical experience
What is dementia?
Dementia is a brain condition that can affect memory, thinking, mental

agility, language, understanding and emotions.
Dementia affects different parts of the brain over time. It can affect
people physically and change the way the brain processes senses such as
sight and taste. There are over 100 types of dementia. The most common
are Alzheimer’s disease, vascular dementia, mixed dementia, dementia
with Lewy bodies, and frontotemporal dementia.
In Scotland, it is estimated that there are around 90,000 people living

with dementia. However, many people are living with dementia but are
undiagnosed. When dementia occurs in someone under 65 it is often
referred to as young onset dementia.
Information
For more information on dementia and the different types,

please see Alzheimer Scotland’s website.
24-hour Freephone Dementia Helpline: 0808 808 3000
Information
There are a number of policies in Scotland that outline the

treatment and support that people living with dementia and
unpaid carers are entitled to.
These include:
• The charter of rights for people with dementia and their

carers in Scotland
• The Scottish Government’s National Dementia Strategy
How is dementia identifed
and diagnosed?

Identifying the signs of dementia and having a formal diagnosis of

dementia can be confusing, upsetting, overwhelming and take a long
time. An initial assessment will be made by your GP or other healthcare
professional. A family member is welcome to attend the appointment to
provide reassurance and support.
How you are assessed will depend on your personal circumstances.

It is important that you receive the right approach for your own
circumstances.
A diagnosis is usually based on several tests and assessments.

These could include mental ability tests, blood tests and brain scans.
The table below shows the type of mental ability tests that may
be part of your assessment.
Mental ability tests that may be part of dementia assessment

Mental ability test What happens
Rapid direct tests These will take less than 5 minutes
to complete. In these tests, you
might be asked a set of memory
questions. You might also be asked
to:
• draw certain shapes on paper
• count backwards, or
• say the months of the year
backwards.
How is dementia identifed and diagnosed? continued
Mental ability tests that may be part of dementia assessment

Mental ability test What happens
Extended direct tests These will take between 10 and
60 minutes to complete. In these
tests, you might be asked to
remember several words and be
asked to repeat them in 5 minutes.
You might also be asked to watch
the assessor and copy their
movements.
Self-completion questionnaire You can complete this in your

own time.
Informant questionnaire This is completed with you or with

family or friends close to you.
Remote cognitive assessment This method is for over-the-phone

assessment. It can be similar to
rapid or extended direct testing.
It involves a lot of memory testing,
as well as several general questions.
Recommendation based on clinical experience
The assessment should not only rely on mental ability tests.

Family members should be asked about your health and wellbeing.
Will I need to see a specialist?
After your initial assessment, you may be referred to a specialist

for further tests.
Not everyone will need to see a specialist, particularly if the tests and
assessments show that dementia is a likely diagnosis.
If you do see a specialist, they may consider scanning your brain. Some
people will need one or more scans and others will not need a scan
at all. Scans help healthcare professionals to fnd out what type of
dementia you have and can help rule out other brain conditions. Finding
the type of dementia can help healthcare professionals understand how
your condition will progress and what treatments may help.
Scanning options will vary in different health board areas but could
include the scans listed in the table below.
Scanning options
Scan How it can help
Computerised tomography (CT) Involves combining a series of
X-rays taken from different angles
to produce images of your brain.
This shows changes in brain
structure that can give more
information about the type of
dementia.
Scanning options
Scan How it can help
Positron emission tomography Detects an injected substance that
(PET) has a low level of radioactivity.
PET scans can be used to assess
brain activity or to detect specifc
abnormal proteins. These scans can
give information that might support
a diagnosis of which disease is
causing your dementia.
Magnetic resonance imaging Uses a strong magnet and radio

(MRI) waves to produce detailed images
of your brain. MRI scans are used
to see if there are changes in brain
structures, which can help diagnose
some types of dementia.
Single-photon emission Involves injecting a slightly

computerised tomography radioactive substance attached to a
(SPECT) dye. SPECT imaging can be used to
study the fow of blood throughout
the brain. This allows doctors to get
information about specifc types of
dementia and decide on the right
course of treatment.
In a small number of people, healthcare professionals will take

samples of spinal fuid, using a lumbar puncture, to help make a
diagnosis of Alzheimer’s disease.
A lumbar puncture may be used to take a sample of the fuid

around your spinal cord and brain. Levels of certain proteins in
this fuid can indicate if your brain is affected by Alzheimer’s
disease.
How can technology be used during and after assessments for support
and monitoring?
After you have had a diagnosis of dementia, it is important for health

and social care providers to be able to monitor and support you. As
well as in-person visits, some monitoring might be done using remote
technology, for example video calls.
Recommendation based on the research evidence
It is important that you and your carer discuss what monitoring

option is best for you.
As a person living with dementia, you might prefer to have face-to-
face contact with healthcare professionals, instead of by video call
or telephone.
Face-to-face contact with healthcare professionals may help them
notice and discuss physical changes in you.
It may be more diffcult to choose remote technology as your main

tool for monitoring support if you don’t feel you or your carer have
suffcient skills or training to use it.
Technology such as smart phones or computers for making video
calls can also be costly. You will not be required to own these
technologies. Face-to-face monitoring and support will be available
to you if you prefer.
Remote technology often provides quicker access to support. More
regular monitoring using technology might allow you or your carer
to feel reassured and connected to healthcare professionals.
If you feel that your needs are not being met while using remote
technology, you or your carer should discuss this with healthcare
professionals. It is important to let them know that you would
prefer a different form of contact.
Who will be involved in a dementia diagnosis?
Every person’s diagnosis is different, which means the people

who are involved in your diagnosis will depend on your individual
circumstances. For example, you may receive your diagnosis
through your GP, specialist experts in dementia in a hospital or
from a care team made up of people with different specialisms.
Although different professionals may be involved, a formal
diagnosis will be given by a trained specialist in dementia.
Your carer should be able to attend and be included in any
discussions. Healthcare professionals should acknowledge the
importance of their role and expertise.
When will a diagnosis of dementia be discussed?
Each person who receives a dementia diagnosis will process the

information differently. It may take time for you and your carer to fully
understand the impact of a diagnosis.
It can be helpful for healthcare professionals to discuss your

diagnosis early on, so that you can access support and services.
The discussion will be tailored to you. If you or your carer need
more time to process the diagnosis, healthcare professionals
should be understanding about this.
For some people, a dementia diagnosis can be a relief or explain a

change in behaviour. You might not feel that way, and that’s okay.
Other people may have been admitted into hospital for a different
medical issue and been given a diagnosis unexpectedly. How you
react to your diagnosis is completely individual; there is no right or
wrong response. Healthcare professionals should work with what
is best for you, as an individual.
At diagnosis I thought my life was over,

I had no future. Now my life is certainly
different, but not over – I have a future.
(Person with dementia)
How will a diagnosis be discussed?
Where possible, support should be available to you and your

carer before a diagnosis is given. It can help you to process the
information more clearly, and ask any questions you or your carer
might have about dementia. You should have access to information
before, during and after your diagnosis.
The healthcare professional should tell you and your carer about
your diagnosis in a clear, sensitive and empathetic way. They
should understand any communication needs you have and make
sure you feel you can ask questions.
Your diagnosis may feel overwhelming, but healthcare
professionals will discuss with you that a positive and hopeful
quality of life is still possible. Your healthcare professionals will be
able to offer advice and information about wellbeing, and how to
maintain your sense of self after diagnosis.
Information
It’s important to remember that:
• everyone experiences dementia differently

• focusing on the things you can still do and enjoy will help
you stay positive
• with the right help and support most people can live well
with dementia.
Information
Healthcare professionals should discuss the following with you:
• If known, the type of dementia you have, the symptoms and how
your condition may progress.
• Tackling stigma and how it can negatively affect your life.
• Where you can get more information about dementia and
the support available, including peer support. This includes
information about support for mental health (see page 32).
• Where you can get free educational courses to learn more about
dementia.
• Where you can get information about benefts and carers’ rights.
• Where you can get help if you need support with day-to-day
tasks (social care).
• Where you can get information about power of attorney and
advocacy.
• The importance of completing the Herbert Protocol form, which
will contain information to help the police if you go missing.
What support can I expect
after diagnosis?

A diagnosis of dementia can be diffcult for you and those around you.
However, support is available for you after a diagnosis. The Scottish
Government has guaranteed at least one year of post-diagnostic support
for everyone diagnosed with dementia.
Post-diagnostic support should:

• be fexible, sensitive and tailored to your individual needs
• meet the needs of both you and your carers
• be welcoming and accessible for you and your carers
• provide support that is culturally appropriate
• address the potential barriers caused by stigma about dementia
• be linked up between different services
• signpost you and your carers to services provided by charities
(see page 32)
• provide information in an accessible way, which is repeated
over time
• take into account all your health needs, not just those related
to your dementia
• consider your carers’ need for social, emotional and
educational support.
What support can I expect after diagnosis? continued
Information
The key to living well with dementia is staying healthy, both

physically and mentally. A good diet, exercise and brain stimulation
are crucial in maintaining good health and wellbeing. You can fnd
out more information from Brain Health Scotland.
I may have dementia but I’m still the

same me. (Person with dementia)
It’s OK to Ask
When you go to your healthcare appointment(s), we encourage you

to ask four key questions that will help you and your healthcare
professionals make decisions together. This will make sure the care
is right for you.
1. What are the benefts of my treatment?

2. What are the risks of my treatment?
3. What alternative treatments can I try?
4. What if I do nothing?
Learn more about “It’s OK to ask”
Learn more about realistic medicine
You can expect care that supports both you and your unpaid carer:
• to help you continue living at home
• to plan your care
• to understand dementia
• with advice on self-care
• with emotional needs
• with clear information about how to access support if things
change
• to help you stay safe, including driving and in the kitchen
• with communication
• living with memory loss
• through access to health professionals
• to think about and plan for the future.
I have recently completed my year of post

diagnostic support. I have found this very useful.
My support worker has helped me get an alarm
system and Keysafe installed in my fat, and
has helped me consider how best to approach
discussions about future care with my family.
She was friendly helpful and considerate in
assisting me in coming to terms with my brain
disease. (Person with dementia)
Information
The following information should be discussed with you and

your carer:
• Managing your symptoms.

• The importance of you and your carer taking part in anticipatory
care planning discussions, including do-not-resuscitate
discussions.
• The importance of making plans for your fnancial and
personal welfare, including the need for power of attorney and
guardianship.
• The importance of a Carer Support Plan (which should include
phone numbers of people to contact to help manage a crisis).
• The availability of the four options for self-directed support and
how this can be accessed.
• Access to respite care and rehabilitation.
• Support when moving from one care setting to another, including
hospital and care home.
• How to access independent advocacy (see page 33).
• Where you can fnd information on your human rights, including
access to free personal care.
• Where to receive fnancial support.
• Employment issues.
People with more advanced dementia may struggle to take

part in discussions to plan their care needs. Future wishes should
be discussed with you and your carers at an earlier point in
your dementia journey. Your wishes should be recorded in an
‘anticipatory care plan’.
What is an anticipatory care plan and how do I create one?
Anticipatory care plans are records of the wishes about future care made
by people with dementia and their carers. Healthcare professionals
should initiate and support discussions about anticipatory care planning.
Having an anticipatory care plan is important because dementia is
progressive and can cause death. It may become harder to make
decisions or communicate your wishes as your condition progresses.
Healthcare professionals involved in your anticipatory care

planning should be:
• aware of the importance of anticipatory care planning
• equipped with specialist knowledge of dementia and
dementia care
• suitably trained in discussions on assessing people with
dementia health needs
• aware of education and toolkits available to support
anticipatory care planning.
Discussions about anticipatory care planning should:

• take place as early as possible
• take place at appropriate times in your dementia journey.
This could be when you are diagnosed or if you change where
you are living
• include information about what anticipatory care planning is,
why it’s important and what the benefts can be
• ensure you understand that anticipatory care planning can
help others make sure your wishes are carried out and support
you to have a ‘good death’
• be tailored to your needs
• consider the needs of your carers and other family
• take place over a series of conversations
• update your plan over time in response to your changing needs
• happen at your home or another place that is quiet, free from
distractions and ensures confdentiality.
How might I feel after a
dementia diagnosis?
Getting a dementia diagnosis can be diffcult to cope with and accept,
for both you and those close to you.
It is common to feel nothing or numbness at frst. It is also common to

feel relief if you have been concerned for some time and just want a
diagnosis to confrm what is wrong with you. Feelings of loss and grief
are common.
What is meant by grief?
Grief is a universal experience that affects us all at some point in our

lives. It is most commonly associated with our feeling of loss following
the death of a loved one.
If you are living with dementia, you may experience different types of
grieving at different stages of your journey. Your carer may also have
feelings of loss and grief.
There are types of grieving that you and your carer may fnd yourselves
experiencing. These are:
• anticipatory grief (see page 21)
• bereavement (see page 23).
More information for carers about complicated grief can be found on

page 30.
How might I feel after a dementia diagnosis? continued
How do I know if the feelings I am having are anticipatory grief?
Anticipatory grief happens before death, while a person is still living.
Information based on the research evidence
You may not think you are grieving after diagnosis and instead:
• think you are just angry and sad at the same time. If you have
had to give up work, you may be grieving for the loss of status
and purpose in life
• feel your future has been taken away against your wishes and
there is nothing you can do. You may be grieving for the plans
you may have made for your future, which you may not see
fulflled
• you may be scared of leaving your partner alone or not seeing
your children/grandchildren or being present at family occasions
like birthdays and weddings
• you may be worrying about how your dementia may progress
and who will care for you.
The frst time my husband asked who I was

and why I was in his house it was at 3am. I was
shocked, upset, confused and scared all at the
same time. I tried to reassure him, but I didn’t
know what to do or say, and I just wanted to cry.
Your carer may also be feeling anticipatory grief because they are:
• feeling scared about the future on their own
• thinking about plans for retirement that may now not happen
• sad that you may never see your children’s life events or
grandchildren
• constantly thinking about what may or may not lie ahead, and
whether they will be able to cope
• feeling guilty because they don’t want to be a carer.
Loss of communication was the worst

thing. You’re living together, but you’re
totally alone. (Carer of person with dementia)
These feelings and emotions are all normal but can be

overwhelming and may arise at any point from receiving
a diagnosis of dementia until a person’s fnal weeks of life.
Anticipatory grief may be heightened during important life
events such as birthdays, weddings and funerals. It can also
happen when there is a signifcant move to a care environment
for the person living with dementia, like a hospital admission
or move to long-term care. Your carer may also experience
anticipatory grief at this time, as they contemplate a future
without you at home with them.
I tried so hard to make the most of each day,

but I couldn’t stop worrying about the future,
and it just seemed to take over my thoughts
all the time. (Carer of person with dementia)
What is it like to experience grief when you have dementia?
Experiencing a bereavement such as the loss of a family member or

friend when you have dementia may be hard to process.
Because you may not be able to remember information, you may

repeatedly re-experience grief, confusion and distress.
You may need support from healthcare professionals if you have
a bereavement to help you process the loss and to manage any
distress, agitation and confusion that comes with it.
Having to repeat information may be diffcult and stressful for your

carers, but seeing you in distress can also be diffcult to cope with.
It is often diffcult for carers to know how best to tell you about a
bereavement. They will want to cause you as little distress as possible.
Support for people with dementia who face grief should be

given by professionals with appropriate training (as defned by
the Promoting Excellence Framework in Dementia).
What support is available to
manage distress?

Sometimes dementia can cause you to become distressed. Behaviour that

may come with feeling distress may include:
• aggression (eg hitting, pushing or swearing)
• agitation (eg restlessness, pacing up and down or fdgeting)
• sleep problems (eg being awake during the night and/or oversleeping
during the day).
Information
Distress is an unpleasant feeling that upsets your wellbeing.

When you are distressed you can feel overwhelmed and unable to
carry on in your usual way. It is normal for people to experience
distress from time to time. Distress can have various causes, for
example a recent argument, thinking about something upsetting,
feeling unwell or in pain. How each person experiences and
manages distress is unique and individual to them.
Why might you experience distress?
There are a basic human needs that every person shares. These include:
• feeling safe to experience love and belonging
• taking part in enjoyable/meaningful activities
• feeling comfortable and free from pain.
What support is available to manage distress? continued
When these needs are not met, this can cause distress. When you have
dementia, you may fnd it diffcult to recognise or express these needs
and this can add to your distress.
What should happen if I am distressed?
You and your carer should be offered a detailed assessment.

This assessment will gather information about you, including your:
• physical and mental health
• life story
• social circumstances
• day-to-day abilities
• spiritual/religious beliefs (if you have them).
This assessment should try to identify what is causing your

distress. This may be done by identifying possible unmet needs
you may have.
Interventions to help reduce your distress should be individually
tailored for you.
Interventions may include activities that take into account your
interests, preferences and past experiences.
This type of assessment should be carried out in care homes as
well as in other settings. Within care homes, staff should receive
suitable training and ongoing support to help them to understand
the distress shown by people with dementia.
How should sleep problems be treated?
To try to improve your sleep, it’s a good idea to combine different

things, such as:
• giving you and your carer(s) information about healthy habits
and changes to your surroundings that may improve your sleep
• increasing the amount of time you have outside in daylight
• physical exercise and individualised social activities.
What support should be offered to my carers when I am

experiencing distress?
Your carers may be offered education and training to help them

understand and manage your distress.
This education and training should be individualised to their
situation.
It may include:
• problem-solving strategies
• stress management and coping strategies
• communication skills
• learning about possible underlying causes of distress and how
to identify them
• talking about their own thoughts and responses
• crisis management.
Using the Mental Health Act to support care
Information
Sometimes healthcare professionals might want proof that you

are capable of making decisions otherwise they might have to take
them for you under the Mental Health Act. They will also discuss
loss of capacity with you and your carer and whether it’s time to
activate a power of attorney.
In some cases, people can become severely distressed and
may become a risk to their own safety or that of their carers.
If this happens, you may need to be sectioned under the Mental
Health (Care and Treatment) (Scotland) Act 2003. This Act covers
situations when someone can be taken to a psychiatric hospital
against their will. If this happens, and there is no alternative,
your healthcare professional should discuss this with you and
your carer beforehand.
Admitting my husband to hospital when I

reached a crisis point and having him sectioned
for 6 months was devastating for me. I still can’t
forgive myself that he felt imprisoned for doing
nothing wrong, and I felt helpless to change it.
What do I need to know about dementia,
end-of-life care and dying?
It is important to understand that dementia is a progressive condition.
This means it will continue to get worse over time, although the way it
progresses is different for everyone. It is important that you, your carers
and family understand that palliative care is not end-of-life care, but
goes on from diagnosis to the end of your life. Palliative care focuses on
making your quality of life as good as possible by relieving discomfort
or distress. Dementia can cause death and many people with dementia
will need end-of-life care. Having an anticipatory care plan can help you
have ‘a good death’ with your wishes taken into account. It also helps
your carer and family feel they have made sure your wishes have been
carried out, which can help reduce guilt and prolonged grief.
What do healthcare professionals need to know so they can support me?
Your healthcare professionals should:

• be aware that the way ‘end of life’ is usually defned may
not apply to people with dementia and make sure they don’t
misunderstand your needs as a result
• focus on your individual needs and not defne end of life by
stages of dementia (for example, early, mid and late )
• make sure you, your family and carers get information so
you understand that dementia is progressive, that it can cause
death and that end-of-life care may be needed at any time
• be aware that palliative care continues from diagnosis to end
of life.
What do I need to know about dementia, end-of-life care
and dying? continued
Information
You, your family and carers should be given information about the
progressive course of dementia. Dementia can be a cause of death
and a palliative approach to care is appropriate at all stages.
What support can I expect when moving from one place to another,
such as transferring from home to hospital, respite care, rehabilitation,
care home or other setting?
Before and during a transition, healthcare professionals should

provide care and support that is tailored to your specifc needs.
This care should focus on quality of life and consider all your
physical, emotional and spiritual needs. Healthcare professionals
should work with you and your carer to develop a plan to address
unmet needs identifed before any move between care settings.
Information
If a move to long-term care can be anticipated in advance,

healthcare professionals should have early discussions with you
and your carers. At these discussions, you can plan for expected
needs and wishes.
Information for carers about grief
How will I know if I am experiencing complicated grief?
Information
Bereavement grief when the person with dementia dies is normal.

It is the same grief experienced by anyone losing a loved one.
Other feelings may include sadness, anger, guilt and numbness.

If these feelings don’t lessen with time and if your feelings of
grief are affecting your ability to resume your own life and move
forward, this is known as complicated or prolonged grief.
People keep telling me he’s in a better

place and at peace now, but I’m not.
When will I stop feeling guilty and be
able to get on with my life again?
Information for carers about grief continued
Information
The feelings below are very common and completely normal.

• You may feel guilty about your caring journey and ask
yourself if you could have done more for your loved one.
• You may repeatedly question yourself about decisions you
made and how and why you made them.
• You may feel you didn’t do enough and “can’t move on with
your life”.
What can help manage feelings of grief?
Healthcare professionals should be aware that carers of

people with dementia may experience complicated grief, and
should consider offering you referral for psychological therapy,
as appropriate.
Where can I fnd out more information?
The organisations we have listed below may be able to answer any

questions you have and offer support.
SIGN accepts no responsibility for the information they give.
National organisations
The Alliance
www.alliance-scotland.org.uk
The Health and Social Care Alliance Scotland (the ALLIANCE) is the
national third sector intermediary for a range of health and social care
organisations.
Care Information Scotland

www.careinfoscotland.scot
Tel: 0800 011 3200
Care Information Scotland provides information about care services,
including options for self-directed support. It offers information on
support for carers, including how to access respite care.
Citizens Advice Scotland

www.cas.org.uk
Tel: 0800 028 1456
The Citizens Advice Bureau can give free, confdential, impartial and
independent advice and information on a wide range of subjects,
including benefts, debt and money advice, consumer issues, work-
related problems and housing.
Where can I fnd out more information? continued
National organisations continued
Department for Work and Pensions (DWP)

www.gov.uk
The DWP provides information about benefts and claim forms.
NHS 24
www.nhs24.scot
Freephone 111
NHS 24 is an online and out-of-hours phone service providing access
to health advice and information 24 hours a day, 365 days a year.
NHS Inform
www.nhsinform.scot
Tel: 0800 22 44 88
Scotland’s national health information service provides people
with information on medical conditions, self-help advice and a directory
of local support groups.
Scottish Independent Advocacy Alliance

www.siaa.org.uk
Promotes, supports and advocates the principles and practice of
independent advocacy. Offers details of where to access independent
advocacy in each area of Scotland.
Self Directed Support Scotland

www.sdsscotland.org.uk
Self Directed Support Scotland provides information, advice and support
to access care.
National organisations continued
Social Security Scotland

www.socialsecurity.gov.scot
Social Security Scotland provides information on benefts and how to
access them.
Resources for people with dementia and their carers
About Dementia
This is an Age Scotland forum working with people living with
dementia and unpaid carers to bring about changes to policy and
practice in Scotland.
https://www.ageuk.org.uk/scotland/what-we-do/dementia/about-
dementia/
Age Scotland
Information and advice for people with dementia and their carers.
www.ageuk.org.uk/scotland/information-advice/dementia/
Alzheimer Scotland
Alzheimer Scotland has a dedicated helpline.
Helpline number: 0808 9808 3000
Resources for people living with dementia
www.alzscot.org/living-with-dementia
www.alzscot.org/ahpresources
Webinars
www.alzscot.org/ahpinnovation
Resources for people with dementia and their carers continued
Alzheimer Scotland
Charter of rights for people with dementia and their carers in Scotland.
www.alzscot.org/sites/default/fles/images/0000/2678/Charter_of_
Rights.pdf
Alzheimer’s Society
Information and support for people affected by dementia.
www.alzheimers.org.uk
British Deaf Association

Dementia-specifc resources for people who are deaf and living with
dementia.
https://bda.org.uk/dementia
Connecting people, connecting support

Resources and activities online for people with dementia, their family
members and supporters.
https://dementiatogether.online
Chartered Institute of Housing

Scottish housing and dementia framework to help organisations support
people to live well with dementia.
www.cih.org/policy/scottish-housing-and-dementia-framework
Dementia UK
Resources for people with dementia and their carers.
www.dementiauk.org/get-support
Dementia Carers Count

Offers a range of free services that give family carers the opportunity to
understand more about dementia and to connect with others in a similar
situation. They offer practical advice on the reality and challenges of
being a carer.
www.dementiacarerscount.org.uk
NHS Inform
Dementia: information and support resources.
www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-
cord/dementia
NHS Inform
Anticipatory care planning information.
www.nhsinform.scot/care-support-and-rights/decisions-about-care/
NHS Near me
Near Me is a video consulting service that enables people to attend
appointments from home or wherever is convenient.
www.nearme.scot
Sight Scotland
Guidance about sight loss and dementia.
https://sightscotland.org.uk/articles/information-and-advice/dementia-
and-sight-loss-guide
The Scottish Dementia Working Group (SDWG)

A national, member-led campaigning and awareness-raising group for
people living with dementia in Scotland.
www.alzscot.org/our-work/campaigning-for-change/have-your-say/
scottish-dementia-working-group/contact-sdwg
Young Dementia UK
Information and support for younger people with dementia and their
families.
www.youngdementiaukhomes.org
Alzheimer’s Society
School teaching resources to make it easy to teach and learn about
dementia.
School teaching resources | Alzheimer's Society (alzheimers.org.uk)
Resources for carers
Age Scotland
Dementia carers’ rights training.
www.ageuk.org.uk/scotland/what-we-do/dementia/age-scotlands-
dementia-training-project/training-for-unpaid-carers-of-people-with-
dementia
Alzheimer Scotland
Resources for carers.
www.alzscot.org/living-with-dementia/caring-for-someone-with-
dementia/resources-for-carers
Resources for carers continued
Carers Trust
Works to transform the lives of unpaid carers through collaboration,
infuence, evidence and innovation.
https://carers.org/help-and-info/introduction
National Dementia Carers Action Network (NDCAN)

A national, member-led campaigning and awareness-raising group for
current and former carers of people with dementia in Scotland.
www.alzscot.org/our-work/campaigning-for-change/have-your-say/
national-dementia-carers-action-network
NHS Education for Scotland

Caring for a Person Living with FTD: a supportive series of resources
for carers.
https://www.nes.scot.nhs.uk/nes-current/caring-for-a-person-living-with-
ftd-a-supportive-series-of-resources-for-carers
Tide
Tide is a body that works to connect, enable and mobilise carers
and former carers of people with dementia to use their experience
to infuence change.
https://www.tide.uk.net/resources/
Tide
Advice on living with grief and bereavement.
www.tide.uk.net/what-we-do/living-grief-and-bereavement/
Resources for carers continued
Tide
Moving Forward Toolkit
A guide for families and relatives involved in or supporting someone to
move into a care home.
www.tide.uk.net/projects/moving-forward
Scottish Dementia Research Consortium

A membership organisation including researchers, healthcare
professionals, people living with dementia and anyone else with an
interest in research.
https://www.sdrc.scot
How are SIGN guidelines produced?
Our guidelines are based on the most up-to-date scientifc evidence.

We read research papers to fnd evidence for the best way to diagnose,
treat and care for patients. If we cannot fnd this out from the
research evidence, we ask healthcare professionals to use their clinical
experience and judgment to suggest treatments.
1 2 3 4
Gather lived Identify the Search for the Look at the
experience questions evidence evidence
5 6 7 8
Make judgements Ask people for Publish Let everybody
and feedback know about
recommendations our guidelines
You can read more about us by visiting www.sign.ac.uk or you can

phone 0131 623 4720 and ask for a copy of our booklet ‘SIGN guidelines:
information for patients, carers and the public’.
The Scottish Intercollegiate Guidelines Network (SIGN) writes guidelines

which give advice for healthcare professionals, patients and carers about
the best treatments that are available. We write these guidelines by
working with healthcare professionals, other NHS staff, patients, carers
and members of the public.
We are happy to consider requests for other languages or formats.

Please phone 0131 623 4720 or email [email protected]
Cover images
It’s important to note that these images are posed by models
and may not accurately refect the experiences of those living
with the condition. It’s also important to note that these
models do not have dementia themselves.
PAT168
Healthcare Improvement Scotland
Edinburgh Offce Glasgow Offce

Gyle Square Delta House
1 South Gyle Crescent 50 West Nile Street
Edinburgh Glasgow
EH12 9EB G1 2NP
0131 623 4300 0141 225 6999
www.sign.ac.uk

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Assessment, diagnosis, care

and support for people with

Who is this booklet for? 1

What is this booklet about? 2

How is dementia identifed and diagnosed? 5

What support can I expect after diagnosis? 14

How might I feel after a dementia diagnosis? 20

What support is available to manage distress? 24

What do I need to know about dementia, end-of-life care and dying? 28

Information for carers about grief 30

Where can I fnd out more information? 32

How are SIGN guidelines produced? 40

© Scottish Intercollegiate Guidelines Network

First published November 2023

This document is licensed under the Creative Commons Attribution-

This information is for people who:

• have been diagnosed with dementia

• may be going through assessment for dementia

It applies to adults living with dementia, including those with young

Your carer may not think of themselves as a carer and may

Nobody chooses to be a carer. I did

Details of further information and advice that may be useful to you at

This booklet shares recommendations from a clinical guideline

The clinical guideline is based on what we know from current medical

If you would like to see the guideline, please visit www.sign.ac.uk

On page 40 you can fnd out how we produce guidelines.

The booklet will cover: The booklet does not cover:

• Assessment for dementia • Childhood dementia, because this

The guideline encourages all health and social care professionals to

It is important to be aware that each health board is responsible

There are two different types of recommendations in this booklet.

Dementia is a brain condition that can affect memory, thinking, mental

In Scotland, it is estimated that there are around 90,000 people living

For more information on dementia and the different types,

24-hour Freephone Dementia Helpline: 0808 808 3000

There are a number of policies in Scotland that outline the

• The charter of rights for people with dementia and their

• The Scottish Government’s National Dementia Strategy

It is important to be aware that each health board is responsible

Identifying the signs of dementia and having a formal diagnosis of

How you are assessed will depend on your personal circumstances.

A diagnosis is usually based on several tests and assessments.

Mental ability tests that may be part of dementia assessment

Mental ability tests that may be part of dementia assessment

Self-completion questionnaire You can complete this in your

Informant questionnaire This is completed with you or with

Remote cognitive assessment This method is for over-the-phone

Recommendation based on clinical experience

The assessment should not only rely on mental ability tests.

Will I need to see a specialist?

Recommendation based on clinical experience

After your initial assessment, you may be referred to a specialist

Magnetic resonance imaging Uses a strong magnet and radio

Single-photon emission Involves injecting a slightly

In a small number of people, healthcare professionals will take

Recommendation based on clinical experience

A lumbar puncture may be used to take a sample of the fuid

After you have had a diagnosis of dementia, it is important for health

Recommendation based on the research evidence