by Ambra Giuliano
When a family member develops dementia, it will inevitably affect family life. Finding out about the condition and coping with it, can be distressing for anyone, including children and young people.
Dementia can create some very challenging situations for families and it can be hard to know how much to explain to children and young people. It is natural to want to protect children from difficult or confusing situations that might potentially hurt them. However, it is important to be honest with them, and offer clear explanations and plenty of reassurance. Children may find it a relief to know a loved one’s strange behaviour is part of a condition and not directed at them. It is important to adapt what you say and the way you say it to the age and level of understanding of the. Also, it is essential to get a sense for how much the children or teens can cope with, and tailor the discussion accordingly. It is important to make sure they feel they can ask questions and share the feelings that they might be experiencing.
The most common guidelines suggest, for instance, that very young children may need reminding why the person with dementia is behaving in an unusual way, or how young people may need to talk about their feelings as changes occur. However, besides the most recurring guidelines, we found some excellent websites that help children to understand dementia in their family.
DEMENTIA IN MY FAMILY
The first website, called Dementia in my family, is arranged according to age groups. Children, teens, or parents who have a family member or know someone affected by dementia, can select the preferred group that will take them through some important information regarding dementia, how to recognise it, and how to best cope with it. The explanation provided by the website for each section adapts language and sub-sections to the preferred age group. Young children and teens can explore the different sections of the website to understand both the scientific explanations and the impact dementia has on individual members of the family; they can also share their own story or read about someone else’s, which makes a difference in helping them not feeling alone. You can visit their website here.
THE ALLY BALLY BEE PROJECT
The Ally Bally Bee Project is currently carrying out an outstanding project. They are aiming to create and publish a book by Christmas 2016, and their mission is to create a personalised children’s book about dementia. The Ally Bally Bee Project is on a mission to make the difficult conversations of explaining dementia to children a little easier with their personalised children’s book about dementia. Imagine being able to explain “granny’s dementia” to your child with a book that features both of them as the main characters. From names and appearances to certain behavioural traits (after all, dementia affects everyone differently) – they plan to allow for such customisation through an interactive website. Users will be able to create their personalised story online then click to have it delivered to their door! You can watch their project grow on their website here.
Do you know any other great projects or websites? Share them in the comments section!