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Dementia that strikes before the age of 65 disrupts jobs, family relationships, and friendships, and can force people to put their life ambitions on indefinite hold. But there are things to be done to improve quality of life and avoid predictable crises.

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.

Any diagnosis of dementia at any stage of life is devastating, but younger people face 10 special challenges.

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.

Because decisions on restricting freedom of movement are based on the likelihood of harm to self and others, people who have younger-onset dementia are far more likely to be placed in behavioral units or in locked nursing care facilities than older people who have the same form of the disease.

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

Appointment of a single trusted person to have a durable power of attorney to manage financial and medical matters should be done while the grantor of the power of attorney is still considered mentally competent. Likewise, it is important to finalize a will and a medical directive as soon as possible. Any confusion in who is appointed to fulfill which tasks can result in resentment and fighting in the family when they most need to stick together.

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

A diagnosis of younger-onset dementia is accompanied by grief and grieving for all affected. As the disease progresses, the outward signs of grief may not be what most people expect.

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.

  • Why aren't people with young onset dementia and their supporters using formal services? Results from the INSPIRED study Monica Cations, Adrienne Withall, Ruth Horsfall, Nicole Denham, Fiona White, Julian Trollor, Clement Loy, Henry Brodaty, Perminder Sachdev, Peter Gonski, Apo Demirkol, Robert G. Cumming, Brian Draper PLoS One. 2017. 12(7): e0180935. Published online 2017 Jul 19. doi: 10.1371/journal.pone.0180935 PMCID: PMC5517136
  • ‘I want to feel at home’: establishing what aspects of environmental design are important to people with dementia nearing the end of life Richard Fleming, Fiona Kelly, Gillian Stillfried BMC Palliat Care. 2015.14: 26. Published online 2015 May 12. doi: 10.1186/s12904-015-0026-y PMCID: PMC4436026.
  • The diagnosis of young-onset dementia Martin N Rossor, Nick C Fox, Catherine J Mummery, Jonathan M Schott, Jason D Warren Lancet Neurol. Author manuscript
  • available in PMC 2010 Sep 30. Published in final edited form as: Lancet Neurol. 2010 Aug. 9(8): 793–806. doi: 10.1016/S1474-4422(10)70159-9 PMCID: PMC2947856.
  • Photo courtesy of SteadyHealth

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