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Coping with Family Challenges of Early-Onset Dementia

Gary Gilles is a Licensed Clinical Professional Counselor in private practice for over 20 years. He is also an adjunct faculty member at the University ...Read More

Most Americans use the term dementia and Alzheimer’s disease interchangeably. But in fact, Alzheimer’s is only one form of dementia, albeit the most common. Currently, 1 in 10 Americans over 65 and nearly half those over 85 have been diagnosed with some type of dementia. And over the next 40 years, as the population and awareness of the disease grow, doctors expect the number of people with Alzheimer’s and other forms of dementia to skyrocket from 4.5 million to as many as 16 million.

But we tend to think of dementia as a condition that afflicts older adults in nursing homes, not business executives or school teachers in the prime of their lives. Yet approximately 500,000 Americans between the ages of 30 and 65 are currently living with a similar but somewhat different type of degenerative, memory-robbing disease called early-onset dementia. Early-onset accounts for approximately 1 in every 10 cases of dementia. And although the disease is heartbreaking at any age, it poses particular challenges for the patient and family because it strikes when families least expect it. To better understand these challenges and what you can do to care for a loved one with early onset dementia, let’s first examine the unique features of this disease.

What is early-onset dementia?

When we refer to dementia we can separate it into two basic types: early-onset and late-onset. Late-onset is the more common type, beginning after age 65. Early onset is the type diagnosed in individuals before age 65; most often in a person’s 40s and 50s. Symptoms of early-onset are similar to those of late-onset and include:

  • Memory loss
  • Confusion
  • Restlessness
  • Misplacing things
  • Trouble performing familiar tasks
  • Changes in personality and behavior
  • Poor or decreased judgment
  • Impaired communication

There is an important distinction that needs to be made between early-onset and the early stage of dementia. Early-onset refers to the age at which symptoms appear; before age 65. Early stage refers to the initial period where symptoms become noticeable but are usually not yet severe. In the early stage of dementia, (whether early-onset or late-onset) symptoms are usually mild and most people can continue to do simple daily tasks. In the late stages of dementia the loved one is significantly impaired both physically and mentally.

The unique features of early onset

While there is definite overlap among many features of early and late-onset, there are also several differences that are unique to early-onset dementia.

  • A substantial majority of early onset disease appears to be linked with a genetic defect on chromosome 14, to which late-onset is not linked.
  • Muscle twitching and spasm is more commonly seen in early-onset than in late-onset.
  • Some research suggests that people with early-onset decline at a faster rate than do those with late-onset.
  • Younger people who are diagnosed with early-onset tend to be more physically fit and active, and many still have family and career responsibilities. As a result, they tend to react differently to the disease, and may be more likely to feel powerless, frustrated and depressed.

Navigating some common challenges of early onset dementia

As difficult as these changes can be for everyone involved, there are action points caregivers can take to help your loved one make these transitions:

Employment

  • Plan for the future. As the disease progresses, your family should form a plan that outlines when an employer should be told about the disease, and at what point your loved one should no longer work.
  • Make adjustments. Examine how your loved one could make adjustments so that he or she may continue to work as long as possible. This might include moving to a less stressful or difficult position, reducing work hours or working from home. These and other options will help to maintain the family’s income and boost your loved one’s self-esteem.
  • Explore other options. Consider early retirement, as well as ways to access all benefits available through your loved one’s employer. The employer may have disability provisions in existing pensions and insurance plans.

Financial and legal matters

  • Plan ahead for financial needs. Meet with a financial counselor who can help you investigate insurance, investments and other financial options.
  • Get your documents in order. Organize all of your financial and legal documents, as well as other important information (insurance policies, Social Security information, wills, advance directives, etc.) in one place, and make sure the necessary family members know where to find them.
  • Explore financial assistance options. Because dementia is a disabling illness, your loved one may qualify for disability assistance from some government programs.

Communication

Early-onset dementia can also present a number of communication challenges for family caregivers. While dementia affects one’s thinking, reasoning and memory, it leaves your loved one’s feelings intact. So it is important to problem-solve communication difficulties in a way that maintains his or her dignity and self-esteem. Each family must experiment to find the means of communication that works best, but here are proven ways to effectively talk to a person with dementia.

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