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What to Expect After a Dementia Diagnosis

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Dementia is a broad category of diseases that causes loss of memory and deterioration in other mental functions. Alzheimer’s disease is the most common form of dementia, accounting for 60 to 80 percent of cases. No one test can determine whether an individual has dementia. A Dementia diagnosis depends on the results of a range of medical tests and a person’s medical history.

A dementia finding is life-changing for those diagnosed, as well as for their families and others close to them. There is currently no cure for dementia, but treatments are available that may help relieve some symptoms. Those with dementia may progress through the stages of the disease at different speeds and with varying symptoms.

Once diagnosed, patients experience a wave of emotions and numbness may set in as individuals are unsure of what to do or how to deal with the overwhelming news.  It is common for patients to grieve the losses they are already experiencing and the future changes that the disease will present in time.

An Emotional Roller Coaster

Anger

There is a loss of control when the direction of one’s life goes off on a course that is very different than the one planned.

Denial

It is common to not only feel overwhelmed by the diagnosis but to question it and deny its accuracy.

Depression

Sadness and hopelessness may be felt because of the uncontrollable way life is changing.

Resentment

“Why me?” and the related question of “What did I do to deserve this?” are asked.

Fear

Thoughts about an unknown future and how the family will be affected are frequent.

Isolation

There may be feelings that no one understands what the dementia patient is experiencing.  Patients may lose interest in relationships with others and distance themselves.

Relief

By assigning a name to the symptoms being experienced, a dementia diagnosis validates the concerns and can lead to positive actions.

Coming to terms with a dementia diagnosis and the emotions that go with it helps to move forward and discover ways in which to live a fulfilling life. Depending on the phase of dementia, individuals are able to function at different levels.

The Phases of Dementia

Mild Dementia

Patients may be able to function independently but will experience memory lapses that can affect daily life. This may include forgetting words or where things are located. There may be memory loss of recent events and difficulty with problem-solving and complex tasks, such as managing finances. Personality changes, such as becoming more subdued or withdrawn, are common, and there may be trouble organizing or expressing thoughts. Patients may misplace objects or get lost.

Moderate Dementia

Those with moderate dementia will need more assistance in their daily lives. It will become more difficult to perform daily activities and self-care, including getting dressed, taking a bath, and grooming. There will be increasing confusion or poor judgment and more memory loss, including no memory of events in the more distant past. Significant personality and behavior changes will occur, often caused by agitation and unwarranted suspicion. Individuals may sleep during the day and be restless at night.

Severe Dementia

Further mental decline as well as worsening in physical capabilities are expected once the disease progresses to severe dementia. There may be a loss in the ability to communicate and a need for full-time assistance with eating and activities of daily living (ADLs). Patients may be unable to walk or sit or to hold their heads up. Eventually, there is a loss of ability to swallow or to control the bladder and bowel functions. There is an increased susceptibility to infections, such as pneumonia.

Those with dementia will progress through these stages at different rates and with differing symptoms. While no cure is available for dementia, early diagnosis can help people and their families make plans for the future. Early diagnosis also allows people to participate in clinical trials. This helps researchers develop new treatments and to eventually find a cure.

Taking Care of Emotional Needs

It is important to find healthy ways to deal with the emotions following a dementia diagnosis. Once a commitment is made to take care of one’s emotional needs, this new phase of life can be experienced with a sense of connection to emotional health.  There are a variety of approaches to aid in accomplishing this. The following suggestions may be helpful:

  • Talk to your doctor about your emotional well-being. Your doctor can determine the most appropriate treatment plan to address your concerns.
     
  • Use a written or audio journal to capture your thoughts and feelings about the diagnosis. Take the time you need to feel sad and to mourn the losses you are experiencing.
         
  • Discuss your family and friends’ feelings in dealing with the diagnosis. Speak honestly about your emotions and theirs.
     
  • Create a support system to include those who are also experiencing the early stages of dementia. Join the ALZConnected Message Board and learn more about the support programs available to patients and their families.
     
  • Discuss your condition with a counselor or clergy member who can help you to see the situation from another perspective and help you to understand more fully the emotions you are feeling.
     
  • Stay involved by continuing to enjoy the activities you love for as long as you are able.

Support is Available

There is no correct approach to dealing with a dementia diagnosis. People deal with this diagnosis in different ways and some days are more difficult than others. It is important not to feel disconnected, isolated or abandoned.

There is a wealth of resources for those with dementia, including Alzheimer’s disease, from the Alzheimer’s Association. Visit their website to learn more.

Contact Us

SALMON Health and Retirement’s communities offer support groups and resources for caregivers and family members, as well as their Tapestry Program for memory care. To learn more, contact us today by calling 800-446-8060 for more information.