The dementia Australia NSW blog *Younger Onset Dementia and ME*

*The dementia Australia NSW blog *Younger Onset Dementia and ME* is a place for people to connect with others, to get information and helpful suggestions.

A diagnosis of younger onset dementia can be very isolating. You may have received a diagnosis, be someone who is caring for a family member, or you may have a mum or dad with younger onset dementia. You are not alone. The National Younger Onset Dementia Key Worker Program provides individualised information and support to improve the quality of life for people with younger onset dementia and also see NSW - Younger Onset Dementia . For more information contact the National Dementia Helpline on 1800 100 500.

Wednesday, 18 June 2014

Talking to children & young people - articles, booklets and links

links to sites that provide information about Talking to children & young people

1) link-   Young Onset Dementia AFA teens
Facts about Young Onset Dementia

  • Young onset refers to the appearance of symptoms in people younger than 65. It is also sometimes called early onset. (In contrast, late onset, which is much more common, occurs after age 65.)

  • It is estimated that approximately half a million people under 65—even those in their 30’s and 40’s—have Alzheimer’s disease or some other form of dementia.

  • Warning signs of dementia might include trouble with new memories; difficulty finding words; confusion about time, place or people; and disinterest in important responsibilities. For a complete list of warning signs, visit

  • These warning signs in younger individuals could be symptoms of Alzheimer’s disease, but they also are often symptoms of frontal temporal dementia, inflammatory disease or Creutzfeldt-Jakob disease .

  • Young onset Alzheimer’s disease is more likely to have a genetic cause than when the illness occurs at a later age. However, new research suggests that the majority of cases of young onset Alzheimer’s disease do not reflect an obvious family history.

2) booklet-  What about the kids
You are probably reading this book after learning the devastating news that your spouse has frontotemporal degeneration (FTD). You are terribly worried about your partner and how you will lose the love of your life to this devastating, progressive disease. But naturally, you are very concerned about your kids. How will they handle their parent’s illness? Unlike many other dementias, FTD frequently occurs in middle age, meaning there are often children at home. When any parent faces a serious illness, their young children and teens need support and flexibility as well as lots of love and understanding. As FTD progresses, it creates ever-changing obstacles and unique challenges for families to manage. Meanwhile, children grow and change. Their development heads in the opposite direction as their ill parent’s. What your kids can understand about the disease and what it will mean for their lives will evolve over the years. Children are very perceptive. They will be aware that a family member has changed or is ill..


3) articlesJust Helping’: Children living with a parent with young onset dementia
Objectives: While the consequences of caring for younger people with dementia have been a growing area of research, little is known about the children of these individuals. This study aimed to discover whether children of
younger people with dementia can be compared to other young carers, the impact of their caring on mood,  burden and resilience and what could promote coping. 
Results: Four higher order categories were identified focusing on: discovering dementia; developing a new relationship; learning to live with it and going through it together. Few participants showed depressive symptomatology, but more than half showed high levels of burden and most showed moderate levels of resilience. A three-stage process model of adapting to dementia is proposed, with children moving through grief to emotional detachment and increased maturity.
Conclusion: This study has implications for service development in light of the National Dementia Strategy and proposals for whole family approaches for young carers. Whole family working by both dementia and children’s services could reduce the burden on children of people with young onset dementia.  

A thesis submitted in partial fulfilment of the requirements for the Honors in the Major Program in Nursing in the College of Nursing and in The Burnett Honors College at the University of Central Florida Orlando, Florida
Young onset dementia (YOD) affects not only the person diagnosed, but the family unit as a whole. It is estimated that as many as 500,000 people in the United States have YOD and around 250,000 children are involved in caring for these people.
A child of a parent with YOD can begin to experience negative effects when the child begins to take part in caregiving for the person with young onset dementia. Feelings of stress, anger, fear of the future, depression, social isolation, and increasing responsibility of caring, can be felt by children as caregivers. Research shows that children of people with YOD have reported an extreme lack of support and decreased communication within the family.  
A review of literature was conducted to gather peer-reviewed articles and journals relating to interventions to help children of parents with YOD cope. However, no studies have discussed interventions specifically for the child. Therefore, information was pulled from 5 studies regarding what children of people with YOD feel has helped them, in their respective experiences, to deal with the stresses of a parent with YOD. Research suggests that individualized care should be provided for these children based on: age, developmental stage, and experience. Children have reported that they cope by spending time away from the home, participating in extracurricular activities, and spending time with friends. Clear communication by all members of the family is also reported to be vital in easing the stresses of caring for a parent with YOD.
 Full text articles are available to fee paying members of Alzheimer’s Australia NSW by emailing