The emotional impact of a dementia diagnosis – and help available

Susie Henley, Clinical Psychologistsusie.henley@ucl.ac.uk

Outline

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

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

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

Living at risk – mood and memory

WORRY

TIREDNESS

LOW MOOD

HypervigilantAlways on high alert for

slip ups

Discount the positiveIgnore all the times when

memory is fine

Poor concentrationMake it harder to remember things as distracted and not

focusing

FatigueBody (including brain) is

“tired” and not as efficient so makes more mistakes

REINFORCES BELIEF THAT MEMORY IS

GETTING WORSE

WORRY TIREDNESS

LOW MOOD

REINFORCES BELIEF THAT MEMORY IS

GETTING WORSE

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

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

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

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

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 Shockx Feelings of grief and sadness for lossesx Concerned about impact on life – both sad, and angryx Worried about other family members who you now know

are at risk

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

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

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

Help and resources

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

Education

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

• You have all done this

Join a peer-support group

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 . . .”

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

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

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

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

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

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!)

Person at risk

Spouse / partner

ChildrenSiblings

Parents

Friends

Work colleagues

GP

Neurologist

Social Services

Psychologist

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

Who are all these health professionals?

• Download from AS website

• Explains roles of different professionals

• When & where you are likely to come across them

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?

Useful resources

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

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

Thank you for listening

• Any questions?