“This is how I want to live if I were to develop dementia!” When I was young one of my favourite TV programmes was “Swiebertje”. When I have a dull moment nowadays I go and find an episode of “Swiebertje” on YouTube. Watching it brings me right back to the excitement I had watching it when I was 8 years old. I can still laugh about the funny situations and the hilarious conversations. Watching “Swiebertje” lifts my mood. I am definitely including it in my Dementia Passport.
Dementia passport
By Jan and Marian Weststrate
Yes, it is true that around 1 in 5 women, and 1 in 10 men will develop dementia at some point in their life (source Alz.org). In New Zealand one in four people die with this disease. This underscores the importance of being prepared and taking proactive steps to manage the condition.
One way to prepare for dementia is by creating a Dementia Passport in case you develop dementia. A Dementia Passport is a document that contains important information about you as a person. It focuses not so much on the medical side but much more on what you deem to be important in your life and enjoy, so that, if you develop dementia and are unable to communicate your preferences, the passport provides that information to those that care for you.
Your passport tells others what music you like; what your morning and evening routine is like; what conversations you enjoy (and don’t enjoy) and what television programmes you like to watch, particularly those ones when you were young. Next, is to list your favourite smell or which smells absolutely upset you (e.g. overripe bananas). It can also include how much you want to be involved with others and what time of the day you would like to be on your own. It is also important to include what embarrasses you, and what kind of situations you want to avoid. Don’t forget to include the type of books you like to read, or have read to you, when you are unable to read anymore. As you can see, you can add many aspects of your life to your Dementia Passport.
Creating a Dementia Passport can help ensure that when you develop dementia you receive appropriate person-centred care, even if you are unable to communicate your needs and preferences. Your passport can also help minimize confusion or misunderstandings among healthcare providers and caregivers, and can provide peace of mind to family members and loved ones.
To create a Dementia Passport, it is recommended to involve your loved ones and closest family. They probably know you better than anyone. You can always ask a dementia specialist to read it afterwards and ask him/her if it all makes sense. They can help ensure that the passport includes all relevant information and that it makes sense to others that do not know you. It is also important to keep your Dementia Passport up to date, and to review it regularly (e.g. yearly) as new things might pop up that you want included.
With one in five to ten people developing dementia, it is better to be safe than sorry on this topic.
Editorial note from Home4All
The Dementia Passport was initially suggested by Evelien Tonkens, professor of Citizenship and Humanization of the Public Sector at the University of Humanistic Studies in Utrecht, The Netherlands. She suggested this on 7/1/2007 in a column in The Volkskrant (a Dutch newspaper).
