Skip to 0 minutes and 6 secondsWhen we're looking at the familial Alzheimer's disease diagnosis and the effect on children in a family where that diagnosis exists, we have the additional aspect of risk to consider. So, not only are children compensating and perhaps caring for an adult parent with disease, which requires physical and practical care from them to manage, they're also living with a 50% risk of developing that disease themselves. So, that in itself can invoke feelings of fear as well as anger at times. Not always recognised as such, but an additional, hugely additional, burden in terms of the risk that these children are living with on top of the care needs that need to be provided.
Skip to 0 minutes and 56 secondsI think that children with a parent affected by familial Alzheimer's disease need access to information about that disease.
Skip to 1 minute and 5 secondsIt's typical often that we try to protect children and in so doing prevent them accessing the information they need to fully understand circumstances they need to understand. I think often when we withhold information from children they make the wrong conclusions, and draw conclusions that are even perhaps worse than the conclusions that they need to be facing. So, in terms of provision we can make available, certainly, advice, and information, and space to ask the questions they need to ask. Thereafter we need to be sign posting to specialist counsellors, who can work with children who have anxieties and questions that need to be followed through in a really systematic way.
Skip to 1 minute and 50 secondsSo, that would either be through a GP referral to specialist counsellors, or through perhaps a school system, which would enable counsellors to become available for these children through school networks. Social services, of course, could also be approached in terms of access to suitable provision.
Jill Walton, who was Support Group Coordinator for Rare Dementia Support, discusses the effect on and the support available for children with a parent affected by familial Alzheimer’s disease.
For more information about supporting young people who have a parent with familial Alzheimer’s disease, see the FAD support group website.
This issue doesn’t just affect people with inherited forms of dementia in the family, other forms of dementia can develop under the age of 65, when people are more likely to be living with children at home; and some children whose grandparents have dementia may ask questions and want to know more about it.
The Alzheimer’s Society also has information about how to explain dementia to children, and advice for how to deal with this situation.
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