Younger-onset dementia is any form of dementia that is diagnosed before the age of 65. The most common causes of younger-onset dementia are Alzheimer's, Parkinson's disease, and vascular dementia, conditions that are also relatively common later in life.
Correct diagnosis is difficult but essential
Doctors don't expect people in their twenties, thirties, forties, and fifties to develop dementia. They may assume that symptoms indicate a psychiatric condition and fail to consider the possibility of a progressive disease. Failure to diagnose correctly can result in an unnecessary tragedy, because many forms of younger-onset dementia are treatable. Some causes of younger-onset dementia are reversible. It is absolutely necessary to get an accurate diagnosis to get timely treatment. In some cases, a return to normal life is possible.
Memory problems become job problems
Many (although not all) forms of younger-onset dementia are marked by memory problems. Failure of short-term and longer-term memory can present insurmountable problems on the job. In some cases it is possible to accommodate memory loss with apps and electronic devices, but in most cases it is necessary to go on disability payments. In the United States, this involves a substantial reduction in income.
People who have younger-onset dementia often continue to be physically healthy
Even if you have younger-onset dementia, you may not look sick. This becomes a problem when your employer is hesitant to make changes on your job to accommodate your disability so you can work a few months or a few years longer. It becomes an issue when a disability case worker or a disability judge takes one look at you and decides you are malingering, that you just don't want to work. It is important to be armed with medical evidence when seeking accommodation in the workplace or approval for disability payments. And relative strength and physical fitness presents another problem.
Younger-onset dementia is a challenge to care providers
As one nurse who takes care of both younger and older patients with dementia puts it, "If they are old, at least we can head them off before they make their getaway. If they are young, they can escape and we can't always do anything about it." Wandering is an issue in the management of dementia at all ages, but it is especially challenging in taking care of younger patients. Combativeness is a safety concern. A 95-year-old who has major neurocognitive impairment is usually a lot easier to subdue than a 35-year-old with the same condition.
Younger-onset dementia may be more physically painful than later-onset dementia
Painful muscle spasms are more common in younger-onset dementia that in other forms of the disease. When they interfere with sleep, they may accelerate the progression of other symptoms. Pain control may be complicated by interactions with other medications.
Financial challenges are numerous in younger-onset dementia
People who develop younger-onset dementia often still have children at home or in college. They are paying mortgages and maintaining cars and the family's health insurance. Younger-onset dementia wipes out the income of one earner for the family at the same time it greatly increases medical expenses. Disability insurance and assistance programs usually cover only part of the expenses of healthcare. Full-time nursing care, in the United States, usually requires families to spend down all of their assets. Sometimes it is possible to protect the financial future of surviving spouse through divorce (which doesn't necessarily mean abandonment of the loved one), but then there are issues of control over care.
Spouses and family members usually have to relearn how to communicate with someone who has dementia
As younger-onset dementia progresses, communication becomes more difficult. It will be necessary to keep the appearance of calm in trying, even desperate situations. It will be necessary to speak in simple, direct sentences, without the distraction of background noise, television, or children at play. Everyone in the family will need to learn to use the same style of communication to avoid confusing the member who has younger-onset dementia.
People who have younger-onset dementia need to get their affairs in order while they are still competent
Younger-onset dementia presents a worrisome fact to adult children and other family members of the patient
Most forms of younger-onset dementia are linked to an identifiable genetic mutation. Children of someone who has younger-onset dementia may wrestle with the decision to get themselves tested to know whether or not they are likely to get the disease. If the test is negative, they may be relieved to know they won't develop the same disease. But if the test is positive, they face their own dilemmas in planning the rest of their lives.
Mourning for the loss of a loved one with younger-onset dementia may be misunderstood
It's not at all unusual for family members who finally lose a member to younger-onset dementia to say that they feel released by the loved one's death. They may be relieved that the suffering of the patient has ended and the suffering of the family will slowly be reduced. They may even be happy to regain control over their own lives. This doesn't mean they didn't care for that family member and don't experience profound loss. Extended family and friends can be supportive by accepting the process of mourning as ending rather than beginning as family members go on with their lives.