Talking to your children and young people about Familial

Alzheimer’s Disease / Familial Frontotemporal Dementia

Alison MetcalfeProfessor of Health Care Research

Overview

• Focusing on parents, children and young people.

• Briefly cover the issues for parents, children and young people.

• Practical pointers for families.

Background

Briefly outline the research activities• Research work with families affected by

range of genetic / familial conditions.• Working to co-design interventions to

facilitate family coping and adaptation to living with the condition.

FAMILY SYSTEMS THEORY

Family structure

Family interactions

Family functions

Family life cycleFAMILY SYSTEMS THEORY

Family Systems Theory

• What happens to one family member will have repercussions for all other family members (often v different repercussions).

• Transgenerational stressors.• Facilitation of families coping and adapting

to living with the genetic condition and / or its risks – improved communication is essential.

Factors affecting family communication

• Emotional impact of diagnosis.• Guilt and blame.• Parents knowledge and understanding.• Care giver burden - care fatigue.• Grief – complex grief reactions.• Key transition points for children and

genetic testing

Family roles in the

communication of genetic risk

information

Children's developing understanding and response to genetic risk

Children begin to notice and question visible difference and some

asked if they were likely to be affected in the

same way to what they observed. Some

understood that the condition was a result of the biological relationship

between parents and child in the same way as

eye colour.

Children understood the condition in terms of

what they could see and how it currently impacted on their daily lives. Most understood the notion of hereditary in terms of the condition being passed down through the family

but had no idea of hereditary patterns.

Children began to understand more about the

condition in terms of expected future symptoms and about mortality. Most understood hereditary in

terms of their relationship to their parent(s) but not to

their future children. Most used genetic language but

without an underlying understanding and could not describe hereditary patterns accurately or

quantify risk

Young people understand that they may carry a gene that could or would affect their health. They had a clearer understanding of mortality although still not

always the stages of progression. They were more able to described hereditary patterns and

begin to realise the implications for their own

future children.

Young adults began to understand the wider

implications of the condition and relate it

more to themselves. They realised how it might

impact on their career choices and on their

personal relationships and how their decisions

relating to genetic testing impacted on other family

members.

Up to 7 years 8 - 11 years 12 - 14 years 15 - 17 years 18 years plus

Children seemed to accept information at a

relatively superficial level. There were some

behavioural problems or signs of stress when they

were not given information in difficult

family situations.

Children continued to accept information at a

relatively superficial level and looked for positives

and did not let the condition become the central focus of their

lives

A period of rebellion for some children who became angry and questioned ‘why

me?’ Some children challenged treatments and

routines.

Young people reported upset and shock as they

better understood the mortality or responded to

test results or faced surgery but they continued to look

for positives and not let the condition monopolise their

life.

The most difficult time emotionally. Young adults were coming to terms with

the implications of the condition at a time when so many other important

life decisions and choices are being made.

Understanding of genetic condition and risks

Emotional reaction

Observations• Children will need different information at different times,

whilst discussing the IGC as a family its important to check individual child’s understanding.

• Talking about the genetic condition is a process – reveal information in response to children’s needs and questions.

• Encourage children to ask questions (at appropriate times).• But check what children REALLY want to know• Honesty and trust.• Reassurance and reminders.• Name the condition then at least children can discuss it

… I think the parents have to really really understand a lot of psychology.

Its not just the physical aspects of feeding and going through a major

operation…. All that is secondary I feel to how a mother has to understand

and its a lot of psychological understanding cos if its not there, the

the children are damaged…

Communication tips children, young people and parents have found useful.

• Children and young people prefer informal discussion often whilst doing other things together eg: driving, cooking or gardening.

• Check their understanding because children worry about upsetting their parents and so may not always ask.

• Talking about the genetic condition is an ongoing discussion rather than a one off conversation. Like adults, children probably need information given to them more than once. They may need time to digest information and then want to come back and discuss it.

• Discuss information young people find on the Internet or in newspapers• Discuss emotions – provide reassurance they are not alone.• Explain parents behaviour if they are anxious or upset.• Being with peers eg cousins in similar circumstances might be helpful• Support and guide decision-making, especially with young people, who usually like to

make their own decisions but with advice from parents.• If you do not know the answer, explain some questions do not have answers or that

you will try to find out for your child. • Agree appropriate times to discuss the genetic condition if your child asks questions

at inopportune moments.

New interventions

• Co-design and development of Multi-Family Discussion Groups.

• Implications for genetic nurses and counsellors.

It has been observed that the following points helped parents talk to their children:• Younger children do not have experience to recognise and anticipate the

fuller implications therefore there is a gradual realisation.• Not feeling pressurised to talk by an impending event eg a school science

lesson.• Talking was a relief for parents and ultimately easier than secrets.• Parents can be the role model for young people – giving them insight into

how to cope with the risk.• Recognising siblings may all have different needs, try to find out what each

understands at different times in their development• Ensure children and young people understand a positive genetic test is not

necessarily a diagnosis (unless genetic testing is specifically used to assist with diagnosing an illness) – some get quite confused about this.

• Belief in a child’s right to know.• Support of other family members, friends and health professionals.• Attendance at support groups gave focus to regular discussion with children

and young people with parents discussing where they were going and what had been discussed when they returned.

What helps parents talk to their children?

Preparing parents to talk to children

• Makes family closer• Support for children• Gives insight and helps them

realise that parent’s being upset about the genetic condition is not down to them or their behaviour i.e.‘no fault’ of theirs

• Confidence to talk to close friends• Children and young people feel

valued by parent(s)• Allows discussion of the genetic

condition and its risk without centralising it to life

• A shared reality and understanding helps children and young people cope

• Reduces risk of children getting inaccurate information from elsewhere.

• It can be emotionally taxing dealing with questions

• Children and young people can remind you about the genetic condition, when you do not want to be reminded

• Questions can arise at inopportune moments – explain when it is appropriate to discuss it

• Wanting to talk to peers but networks can be limited

• Can affect school work for a short time (but so can worrying about what’s happening in their family if there is secrecy).

Benefits Drawbacks

Conclusions

• If parents are able it is better to talk to their children and young people.

• Good communication assists the family in coping and adapting to the genetic condition – resilience.

• Getting communication better between parents and children will lead to stronger family relationships in the longer-term.

Questions?

alison.metcalfe@kcl.ac.uk

References - selection

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