According to the Alzheimer’s society there are 15,000 people with early-onset dementia, that's people under the age of 65. It is relatively rare and very shocking for the person and their partner.
Often people have to go through a series of misdiagnoses such as depression, stroke and sleep apnea before they are correctly diagnosed with Alzheimer's. By the time the disease has been diagnosed, there may already be quite pronounced changes in the brain.
This is a time when it’s important to take stock and begin to plan your life accordingly. Sadly, it’s a disease that doesn’t follow any strict rules, so it’s difficult to predict both how it will progress and how it will affect your daily life.
It’s really important for you to manage the situation positively – although this is easier said than done.
Things to think about:
• care - decide what you are capable of and at which points you'll need help. Your medical specialist will be able to advise you what they can offer and how to make contact with the local authority. There are some amazing professionals in this field and volunteers who can help
• talk to your children - having a sense that something’s amiss can cause real anxiety for children, whatever their age. However hard it is for them to know, it’s important they’re fully aware and involved
• include your friends and family - the more openly you talk to them, the easier they’ll find it to respond to you and be supportive in the way you need
• dementia can effect sexual behaviour - depending which part of the brain has been affected. It can mean more interest in sex or less sensitivity to a partner’s needs, more aggressive behaviour and changes in levels of inhibitions. It’s really important that you both feel comfortable with what’s happening
• find out about possible financial benefits - as your partner’s career will change and eventually end. You also need to consider how this will affect your career and plan for the necessary help
• settle legal matters - such as power of attorney
• write a living will.
There's no better time to start living in the present. It might sound a bit morbid but making a list of the 10 things you want to do before you die is a very good way to focus on what matters most to you. Ask your partner to do their own list, so you can compare. Your lists won’t be identical and that’s fine - if there are things your partner doesn’t want to do, find people who will accompany you at some other time.
Caring can be hard work and you need to be healthy and happy. Have some breaks by yourself, meet a friend, go to a class, have a weekend away and build up your own social network. Don’t feel guilty about taking some time out.
Keep an eye on your dreams and make sure you’re as near to fulfilling them as possible.