Home‎ > ‎

What to Expect After Diagnosis of Dementia

    Often when someone has been diagnosed with dementia, or Alzheimer's, they have been suffering from the disease for some time.  With some types of dementia, such as Frontotemperal dementia (Pick's Disease), individuals do not know for 5 years or longer that there is anything wrong at all.  Sometimes it is mistaken for other things and can often lead to divorce or other relationship issues, and by the time a diagnosis is given it is too late for some marriages or friendships because the damage has been done. 
    Often family members or friends will notice symptoms in behavior long before diagnosis and many may agree that dementia was the last thought in their mind as being the problem.  Most people feel like it will never happen to them or their parents, or even their children. 
    Denial is most always the first reaction.  Then trying to find a way to change it, or reverse it, or pretend like it is not happening at all.  It isn't easy to accept going backwards.  We spend our whole lives accomplishing marking points of growth or making achievements, building on our life.  The thought of all of it becoming undone is horrifying.   Even if you or your family are in denial or think you can make it through this without help, odds are that counseling will be needed.  I don't think that most people realize how much counseling can offer to someone.  It can teach you to understand and put into perspective your situation and help with self esteem and self confidence.  It can help you feel stronger emotionally. 
    Many people want to give up, some people want to do everything, impulsively.  Many individuals with dementia spend money impulsively, often making large donations to any charity mail received at all.  The perception of money is usually not stable and the understanding that it will eventually be gone is usually not clear.  Having a discussion about finances with someone close will usually give you or a loved one a good heads up that it is time to appoint an executor to help take care of finances and medical decisions.  Often there is a great deal of paranoia with this topic.  I can speak from experience in saying to someone suffering with dementia, if you have trusted this person (the person you choose for Power of Attorney) your whole life and had no doubts until you had this issue (dementia), you can still trust that person...you should realize that, in most situations it is the false perception that dementia causes that will cause you to not trust someone you always trusted.  There will almost always be something, or many things, that cause you to feel like there is a conspiracy against you.  You have to remember that your brain is what controls your mind, and that is the organ first affected by the disease.  With each part that becomes affected the parts it controls will also be affected.  Think of it like a computer with a virus.  Your brain is the computer and all the files are affected by the virus, some don't open up, trying to open some causes it to freeze, and sometimes it will crash completely.  Every day is different.  The sooner you put a plan into action the easier it will be with you to live with it, and the more choices you have in the plan.  If you wait and don't do anything your family, a friend, or the state you live in will have to step in eventually and then you won't get any say in your life. 
    Sitting the people in your family down and talking about it is the best way to tackle it head on.  It will be emotional, it will be hard, but if you love each other, and you trust each other you will get through it, accept it, and work together as a team to make necessary changes to live as fulfilling a life as possible. 
    Some people don't have much family support, some don't have any family support.  This is when you want to get involved with a senior center in your area.  You may see individuals far more impaired than you think you'll ever be, but volunteer there and help them.  It will teach you about yourself and what to expect and what you may want for yourself later, and most of all you will build relationships that give you emotional support.
    One of the reasons I created this website is to give a support group for people who need someone to talk to.  A place where someone knows what you may be going through as a caregiver, family member, a person with dementia, or a friend who has someone close with dementia.  Sometimes another persons perspective can give more than we could imagine.