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Guidebook For The Recently Diagnosed

If you are concerned that you might have dementia…

Some forgetfulness is a normal part of aging, but people who forget or misplace things often may begin to worry that they have Alzheimer’s disease/dementia. If you are wondering if you should be evaluated for dementia, here are some signs to watch out for:

  • Do you forget things like people’s names or things that you have done recently?
  • Do you have difficulty cooking, cleaning, or doing other everyday tasks?
  • Do you misplace things like keys or glasses more often than normal?

If you are concerned, the best thing to do is to talk to your primary care doctor. There are some simple tests that the doctor can perform in the office, and he/she can refer you to a memory clinic or other specialist if needed. There are things that can be done to help reduce the symptoms, so be sure to seek help early. Read our Diagnosing Dementia page to find out how doctors determine if someone has dementia.

If you have been recently diagnosed with dementia…

Getting a diagnosis of Alzheimer’s disease or another dementia can be overwhelming. After diagnosis, you will probably feel a range of emotions; fear or anger are very common initial reactions. You might also feel guilty knowing that you will eventually need to rely on family and friends to care for you. Or, you may even feel relief because a diagnosis of dementia confirms that something was wrong and you aren’t just “crazy.” All of these reactions are completely normal.

If you are feeling some of these emotions, you may find it helpful to talk with a friend, doctor, or therapist. Or, you may enjoy keeping a journal of your thoughts. Writing in a journal or diary may also help you keep track of things that need to be done, or tasks that you have already completed. You might also want to consider joining a support group or an online community. It may be difficult to get motivated, but it is important during the earlier stages of dementia to spend time with family and friends doing activities that you all enjoy. You might also want to read about what you can do to slow down the progression of dementia.

What Should I Expect Down the Road?

Every form of dementia has a somewhat unique set of symptoms, and each person experiences the symptoms a little differently. There are some symptoms that are primarily associated with certain dementias. It might be years before you develop these symptoms, or they might be mild at first but then gradually get worse.

Alzheimer’s Disease

  • Difficulty learning new things.
  • Difficulty finding words and forgetting names of people and objects.
  • Becoming confused about where you are.

Vascular Dementia

  • Difficulty solving problems.
  • Difficulty walking, or problems accomplishing other physical tasks.
  • Sudden onset and a “stepwise” progression, meaning that symptoms may suddenly get worse, unlike Alzheimer’s which has a slower, more gradual progression.

Lewy Body Dementia

  • If you have Lewy Body Dementia (LBD), you may notice some symptoms that resemble Parkinson’s Disease:
    • Moving slowly.
    • Standing very stiffly.
  • You may also notice some symptoms that resemble Alzheimer’s Disease:
    • Problems making new memories.
  • However, there are some symptoms that are unique to LBD:
    • Hallucinations.
    • Becoming more active at night, and acting out dreams.
    • Symptoms improving or worsening over short amounts of time.

Frontotemporal Dementia

  • Losing interest in everything.
  • Needing to be constantly active.
  • Losing the ability to make safe decisions.
  • Difficulty understanding and recognizing words or faces. Or, trouble finding the right word to use.

Resources

Dealing with Alzheimer's Blog

Source: creatingmemories.blogspot.com/
Description: This series of blog entries, written by an individual with early onset dementia, is for individuals diagnosed with Alzheimer's disease and provides information and suggestions on how to live with the disease. Topics covered include taking care of yourself, family & friends, coping with changes, planning ahead, and making job decisions.

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Dealing With Alzheimer's Blog

Source: K (person with Alzheimer's)
Description: This blog is written by a woman diagnosed with Alzheimer's Disease and chronicles day-to-day life with this disease.

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What Happens Next?

Source: National Institute on Aging (NIA)
Description: This brochure for individuals with early-stage Alzheimer's Disease discusses how to tell family and friends about the diagnosis, coping strategies, expectations, and other issues those with this diagnosis face.

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