1. The emotional impact of a dementia
diagnosis – and help available
Susie Henley, Clinical Psychologist
susie.henley@ucl.ac.uk

2. Outline
• Living at risk
• Receiving the news that you’ve developed FAD
• Help and resources

3. Living at risk
• Everyone is different
• Share the fact that you or someone you know is at risk for
FAD
– But all individual personalities, characteristics
• How you and your family react to a diagnosis depends on
many different factors

4. Living at risk
• Tendency to “look” for symptoms
• Intrusive thoughts about AD
• Worry about getting AD
• Sadness, grief, anger, frustration, helpless about the family
situation
But also . . .
• Keep healthy and mentally active
• Re-contact family and friends and spend time with them
• Plan finances etc. for the future
• “Make the most of life” mentality

5. Living at risk – mood and memory
Hypervigilant
Always on high alert for
slip ups
WORRY
Discount the positive
Ignore all the times when
memory is fine REINFORCES
LOW MOOD BELIEF THAT
Poor concentration MEMORY IS
Make it harder to remember GETTING
things as distracted and not WORSE
TIREDNESS focusing
Fatigue
Body (including brain) is
“tired” and not as efficient so
makes more mistakes

6. LOW MOOD
WORRY TIREDNESS
REINFORCES
BELIEF THAT
MEMORY IS
GETTING
WORSE

7. Strategies
• Identify the ways you’re thinking
– Are you being over-alert for slips?
– Are you ignoring lots of positive evidence?
• Recognise when you / your family member can’t
concentrate or is tired
– Tell yourself that everyone struggles when they are tired or has a
lot on their mind
• Relax
– Muscle relaxation
– Reading, listening to music, going out for dinner
• Lift your mood
– Schedule your favourite activities into your day

8. The diagnostic process
• Tests such as brain imaging, cognitive tests
• Can take time to be certain (i.e. not a one-off set of tests)
– Change over time is often a useful way of discriminating AD from a
different illness, but means that the at-risk person needs at least
two tests at two different times, some months apart
• Talking to your partner, spouse or other family members
– Sometimes they might notice things that the at-risk person doesn’t
• Taking into account other things in your life
– Things such as tiredness, stress, other illness might affect how you
do on the tests

9. Receiving a diagnosis
• Who is there for the diagnosis?
– Partner, family, friends?
• How is the information given?
– Usually orally, but backed up with a letter
• How much can you take in at that point?
– Many people just diagnosed, and their partners and families, find it
hard to take in much more than the actual diagnosis at that
point, even if they are given other information
• What information is most useful at that point?
– Worth thinking ahead about what you would most like to know
straight away, and what you can wait to ask about at a future
appointment

10. Taking in the information
• Ask the medical professional to explain things again if you
couldn’t take it all in the first time
• Ask if they will write a letter
– When (roughly) will it be posted?
– Who will it be addressed to (you, or your GP, or someone else)?
• When will your next appointment be?
• Is there a way to have your questions answered in-
between appointments?
– There may be a NHS-led service, like a telephone clinic, specialist
nurse
– Or there may be voluntary services like the Alzheimer’s Society

11. Receiving a diagnosis
 Hope that it’s not AD but often assume that it is, and
experience relief and confirmation when told so
 Access to support
 Able to look up and better understand problems
 Can start planning for the future
x Shock
x Feelings of grief and sadness for losses
x Concerned about impact on life – both sad, and angry
x Worried about other family members who you now know
are at risk

12. Planning how you receive a diagnosis
• Who would you like to be there with you?
– Tell the doctors this at an earlier appointment
• What are your most important questions if you get a
diagnosis?
– Write them down and take them to appointments with you
• Who else will you want to tell?
– Think about what other friends and family you might want to talk to
if you get a diagnosis
– Consider whether you would like to let them know beforehand that
you are having tests done, and what the outcome might be

13. What people want to know
• At diagnosis
– More information about the disease
– What medication might help
• Early follow-up
– How does FAD progress
– What services are available and what to do in a crisis
• Later follow-up 1
– Support groups
– Benefits, financial and legal issues
• Later follow-up 2
– Psychological and complementary therapies
– Support for carers

14. A process, not a single event
• The whole diagnostic process takes time
• Your reaction, and your family’s reaction will also change
over time
• Lots of resources to help you manage, different sources of
help at different times

15. Help and resources

16. What helps around the time of diagnosis
• Education
– Information about AD, prognosis, symptoms, medication etc.
• Social support
– From family, friends, voluntary agencies, social services, peer-
support groups
• Communication and problem-solving in the family
– Talking openly about the diagnosis, sharing information, working
things out together
• Concrete planning for care for the person with FAD
– Often starting to do this helps people feel less uncertain about the
future and more confident about their role

17. Education
• Leaflets / discussion with your NHS team
• Peer-support groups
• On-line resources e.g. Alzheimer’s society, NHS Choices

18. Join a peer-support group
• You have all done this

19. Social support
• Look for other local groups – Alzheimer’s Society often run
things for example
• Can feel hard to share your news with friends and
neighbours
– Don’t assume their reaction will be unhelpful
– Test it out with some trusted friends and see
• Jot down things that you need help with so that when
someone says “Can I do anything to help?” you can say
“Yes, I would really love you to do . . .”

20. Communication and problem-solving in the
family
• Again, can feel difficult to talk about
• Evidence shows that being open and trying to come up
with solutions as a family helps people feel more confident
and supported
• Don’t assume that other family members can’t manage
– People with AD and their partners often worry about how to protect
their children . . .
– But . . .
– . . . children of people with a diagnosis are often pleased to be
given some responsibility and join in with helping

21. Concrete planning for care for person with
FAD
• Hard to live with uncertainty
• Learn about prognosis, and help available
– Feel more confident about what to do
– Know where to find more information
• Talk about what’s important

22. Emotional support
• Many days when you will feel fine
• It is normal to feel
cross, frustrated, sad, anxious, tired, guilty, stressed
• You are not the only person who has those feelings
– Share your feelings at a peer-support group and see how many
people can relate to you
• Think about what used to help in the past
– Phone a friend and let off steam
– Take a bath
– Take time every day to sit and breathe slowly, or relax your
muscles, or listen to some music
– Go for a walk

23. Counselling
• If feelings get really overwhelming
• Recommended by NICE
• Does it work - yes!
• Increasing evidence that counselling can help both people
with a diagnosis of AD, and carers
– Group psychotherapy reduces depression and anxiety in people
with AD
– CBT can reduce depression in people with AD
– CBT is helpful for carers who are experiencing stress or low mood
• Some services are now offering counselling specifically
tailored to people with AD and carers

24. How do I access this?
• Your GP should be able to refer you to some sort of
counselling
– Cognitive Behavioural Therapy
– Psychotherapy
– Family therapy / systemic therapy
• Your GP should also be able to discuss whether
medication might be appropriate if you have persistent
symptoms of depression, anxiety or stress

25. Think about everyone in the system
• Not just the person at risk
• Not just the spouse
• Siblings, children, friends, work colleagues, parents etc.
• And all the medical professionals
• (This applies to medical professionals too!)

26. GP Social
Services
Parents
Psychologist
Spouse /
Person at partner
Neurologist risk
Siblings
Work Children
colleagues
Friends

27. What are all the different services?
• Specialist services (e.g. NHNN clinic) – diagnosis, on-
going follow-up as needed
• Local services – GP, Community Mental Health
Teams, Social Services, – to help manage things at
home, and help with issues as they arise
• Peer support groups – for people with or at risk of FAD
and families – talk to people in similar situations, share
stories and resources
• Counselling – for people with FAD and / or families
• Training courses about AD

28. Who are all these health professionals?
• Download
from AS
website
• Explains
roles of
different
professionals
• When &
where you
are likely to
come across
them

29. How can we help even more – unanswered
questions?
• What is it like living “at risk” for FAD?
– How can we help with this?
• What individual differences affect how people react to
getting a diagnosis of FAD?
– How can we tailor diagnosis and the information given to suit
people better?
• What are the most effective ways of helping newly-
diagnosed people and their families?
• How do peoples’ emotions change in the months and
years following diagnosis?
– What different help might people need at different times?

30. Useful resources
• Alzheimer’s Society
• Age UK
• Dementia UK
• Carers UK
• NHS Choices “Carers Direct”
• Your local social services
• Peer support group

31. Remember
• Everyone feels differently
• If you find it hard, there are lots of resources out there to
help
• Know where to go to access these resources
– This support group
– GP
– NHS team
– Websites

32. Thank you for listening
• Any questions?