Frontotemporal Dementia Caregiver Support Center

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Caregiver Issues - Children

The information on this page is for reference and educational purposes. There is no substitute for seeing a doctor.
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The Nemours Foundation's Center for Children's Health Media provided a excellent article about dealing with death of a parent. I have modifed the article here to pertain to Frontotemporal Dementia. If you read the full article replace the definition of death with the definition of dementia.

When someone is diagnosed with Frontotemporal Dementia, it can be difficult to know how to help your child cope with this, particularly as you work through your own disbeliefs and issues.

How much kids can understand about dementia depends largely on their age, life experiences, and personality. But there are a few important points to remember in all cases.

Be honest with your child and encourage questions. This can be hard to do because you may not have many of the answers. But it's important to create an atmosphere of comfort and openness, and send the message that there's no one right or wrong way to feel. You might also share any spiritual beliefs you have about dementia with your child.

And if you need help, there are many resources from books, counselors, and community organizations - that can provide guidance. Your efforts now will go a long way in helping your child get through this difficult time and through the inevitable losses and tough times that come later in his or her life.

 

Best FTD Resources



What If It's Not Alzheimer's
© 2003 by Lisa Radin and Gary Radin

Chapter 23
Pages 315-316
A Child's Grief

Association of Frontotemporal Dementia (Website)

No information was found on this website about this topic.

Pick's Disease Support Group (Website)

Supporting Children Article
Telling the Children
+11/27/06 (Victoria F.)

University of California, San Francisco (Website)
No information was found on this website about this topic.
Family Caregiver Alliance (Website)

No information was found on this website about this topic.

National Institutes of Health (Website)

 

Other Internet Articles



Quotes from a Yahoo Support Group Member

My children have watched their grandfather suffer for years and were
devastated when he died, as much as anything from never having had a
chance to know him, and we started to try and shield them from the
reality of what is happening and will happen to their granny also
but it just did not work.  They were more stressed from imagining
and knowing we were not telling them everything.  It is hard for
them to accept but much healthier to have it out in the open and
talk about it.

******************************

Someone said today, "They (the children) will just have to accept that its the
illness not him."  Do not expect them just to 'accept' that.  Kids
hearts are not programmed to accept, they expect and deserve to be
loved unconditionally and so when they are not they need major help
from everyone to come to terms and cope with that, and that is the
extra burden all you mums have to bear.  Please do not be angry with
them when they cannot cope with this.  Its taken me years of therapy
to be able to accept it.  Don't get me wrong, I loved my dad and
would have given anything for this not to have happened, but the
mistake everyone in my life made for me and my sisters was to pretend
they didn't see what was going on so we did not have anyone to talk
to or turn to as kids, and it screwed us up completely. 

I cannot possibly explain the respect and admiration I have for every
mum who has made the decision to do whatever they can in their power
to protect their children. 

Thinking of you all in this horrible difficult time.  I know from all
I have read that many times people are in this horrendous place and
they have come through, needing support and understanding every step
of the way, but they have done it.  I do hope you can get that too.


Gill W.

+11/28/06 (Gill W.)

The Victorian government in Australia has a website called Better Health Channel.

Dementia - Tips for parents and grandparents

Alzheimer's Society (United Kingdom)

Explaining to Children

What's going on in Grandpa's Head

My Dr. (Australia)

Helping Children Cope

The Ribbon Online

Dementia Information for Children and Teens

Alzheimer's Australia NSW offers this PDF File

Short Resource List of Articles for Children

Mental Health Foundation in the United Kingdom
called, "The Milk's in the Oven"

36 Page Booklet about Dementia

Younger dementia: how to convey to children?

http://www2f.biglobe.ne.jp/~boke/newletter2001.htm

BBC Radio Shropshire Factsheet in the United Kingdom

FactSheet

Alzheimer's Australia

Information about dementia for parents and grandparents

KeepKidsHealthy.com offers this web page about Death and Loss. Hopefully there are useful ideas that can be used

http://www.keepkidshealthy.com/parenting_tips/death_and_loss.html

Joseph Rowntree Foundation in the United Kingdom offers this web page about a study of children concerns and issues with a parent with mental issues.

http://www.jrf.org.uk/Knowledge/findings/socialpolicy/514.asp

University of Washington offers
" HELPING CHILDREN UNDERSTAND ALZHEIMER’S DISEASE"

http://depts.washington.edu/adrcweb/DIMS06/DIMS06story3.html

Social Care Institute for Excellence (SCIE) website in United Kingdom offers this PDF file about Being a Young Carers

http://www.scie.org.uk/mhnetwork/files/youngcarers.pdf

SCIE also offers this research web page with more articles to review

http://www.scie.org.uk/mhnetwork/resources.asp

The Yahoo Health Chat groups has a group called "Pick's Disease Support Group for Kids." Unfortunately, it has only been used once this year in 2006.

http://health.groups.yahoo.com/group/picksdiseasesupportgroupforkids/

The British Psychological Society offers,
"Children of Early dementia suffers live 'a day at a time'

http://www.bps.org.uk/media-centre/press-releases/releases$/psige-section/daytime.cfm

+12/19/06

RealMentalHealth.com offer this article called,
"Explaining Alzheimer's Dementia to Children"

http://realmentalhealth.com/alzheimers/caregivers_9_03.asp

+12/19/06



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