Early Onset Dementia: Care, Work, Benefits and Support

Early onset dementia, also called younger onset dementia, is dementia that begins before age 65, often when a person is still working and raising a family. Help exists on several fronts: workplace protections under the ADA, faster Social Security disability decisions through Compassionate Allowances, family leave for caregivers, early legal planning, support groups for younger people and practical help at home.

Alzheimer's disease is the most common cause. The National Institute on Aging says most people with Alzheimer's develop it at 65 or older, with less than 10% of cases occurring before then. The Alzheimer's Association says many people with younger onset Alzheimer's are in their 40s and 50s, and that they can be in the early, middle or late stage of the disease.

Most younger onset Alzheimer's is sporadic, not inherited, and doctors do not understand why it appears so young. In a few hundred families worldwide, rare genes directly cause the disease, with symptoms tending to start in the 30s, 40s and 50s. NIA adds that a child of a parent carrying one of these variants has a 50/50 chance of inheriting it.

Frontotemporal dementia, or FTD, is the other big cause at younger ages. NIA calls frontotemporal disorders a common cause of early onset dementia and says roughly 60% of people with FTD are 45 to 64 years old. The Alzheimer's Association notes that in the 45 to 65 age range, the behavioral and language forms of FTD are nearly as common as Alzheimer's.

Doctors do not usually look for dementia in a 50 year old. The Alzheimer's Association says getting an accurate diagnosis of younger onset Alzheimer's can be a long and frustrating process, and that it is not uncommon for symptoms to be put down to stress, menopause or depression, sometimes leading to more than one misdiagnosis.

FTD adds its own confusion. Its first signs are often changes in personality, behavior and judgment, or trouble with language, rather than memory loss. NIA says behavioral variant FTD is sometimes misdiagnosed as a mood disorder such as depression, and that family members may think the person is simply misbehaving.

The Alzheimer's Association advises writing down the memory or thinking problems you notice and asking for a full medical evaluation with a doctor who specializes in dementia. There is no single test; a diagnosis comes from a medical exam and possibly cognitive tests, a neurological exam and brain imaging.

The Americans with Disabilities Act covers employers with 15 or more employees, including state and local governments. Under Title I, employers must give people with disabilities an equal opportunity in hiring, promotion, training, pay and other parts of employment.

EEOC guidance says a person asking for an accommodation only has to tell the employer they need a change at work for a reason related to a medical condition. They may use plain English and do not need to mention the ADA. A family member or health professional can make the request on their behalf.

The request starts an informal, interactive process with the employer. EEOC guidance lists job restructuring, leave, modified or part-time schedules, modified workplace policies and reassignment to a vacant position as types of accommodation. A modified schedule can mean adjusted hours, periodic breaks or changing when certain tasks are done. Whether an accommodation is required depends on the job and on undue hardship to the employer, so an employment lawyer or the EEOC can answer specific questions.

The Alzheimer's Association says that anyone diagnosed while still employed should learn every benefit their employer offers and use them before leaving the job. Ask the benefits administrator about paid sick leave, short-term and long-term disability, what share of salary the policy pays, how soon payments start, and what happens if employment ends. Keep written confirmation of everything.

Private disability insurance must be in place before symptoms appear. According to the Alzheimer's Association, benefits from an employer plan may be taxed as income, while benefits from a personal policy you bought are not taxed as income.

Health coverage needs a plan too. COBRA lets a worker at a company with 20 or more employees keep group coverage for 18, 29 or 36 months depending on the circumstances, paying the full cost plus up to 2% in administrative fees. Without COBRA, the Health Insurance Marketplace cannot deny coverage or charge more for a pre-existing condition.

On retirement savings, the Alzheimer's Association says pension plans often pay early to a worker who meets the plan's definition of disabled, and that it may be possible to withdraw from an IRA or employee retirement plan before age 59 1/2 without the usual 10% early withdrawal penalty. Withdrawals are usually taxed as income. Rules differ by plan, so talk to a financial planner or tax professional before touching these accounts.

The Social Security Administration has added early onset Alzheimer's to the conditions in its Compassionate Allowances program, the Alzheimer's Association reports. That gives people with the disease faster access to Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) without changing who is eligible.

For FTD, the Alzheimer's Association says workers diagnosed with Pick's disease, primary progressive aphasia or ALS can also qualify through Compassionate Allowances. Social Security can be reached at 800.772.1213.

Medicare usually starts at 65, but the Alzheimer's Association says people with younger onset Alzheimer's become eligible once they have received Social Security disability benefits for at least 24 months. Medicare covers hospital care, some doctor fees and prescription drugs, and some home health care under certain conditions. It does not cover long-term nursing home care or ongoing non-medical help at home.

Younger onset dementia lands in the middle of family life. The Alzheimer's Association acknowledges that a parent may grieve changes in their role and wonder about the milestones ahead. How much to tell children is a decision for the parents, based on what each child can understand. The Association offers material on helping kids understand dementia.

A spouse often becomes the main caregiver while still working. The Family and Medical Leave Act gives an eligible employee up to 12 workweeks of unpaid, job-protected leave in a 12-month period to care for a spouse, child or parent with a serious health condition. Group health insurance continues during the leave, and the employee returns to the same or an equivalent job.

The FMLA applies to private employers with 50 or more employees and to all public agencies. The employee must have worked there at least 12 months, for at least 1,250 hours in the year before leave, at a site with 50 or more employees within 75 miles. Leave can be taken in separate blocks when medically necessary, which suits appointments and hard weeks.

The early stage is the time to put legal and financial plans in place, the Alzheimer's Association says, because the person with dementia can still take part in the decisions. Alzheimers.gov agrees that financial documents must be created while the person still has the legal capacity to make decisions.

A durable power of attorney names an agent to handle financial matters and stays valid after the person can no longer decide. A power of attorney for health care, also called a health care proxy, names someone to make medical decisions. A living will sets out wishes about life-sustaining treatment. A will and, for some families, a living trust cover what happens to property.

The person keeps the right to make their own decisions for as long as they have legal capacity. Laws vary by state, so an elder law attorney is the usual starting point. Alzheimers.gov notes that families who cannot afford a lawyer can find help through Area Agencies on Aging, legal aid offices and state bar associations.

The Alzheimer's Association runs support groups, and some are only for people with early onset Alzheimer's. Its Helpline, 800.272.3900, and local chapters can point you to groups, education and online message boards for both the person diagnosed and their care partner.

For frontotemporal dementia, the Association for Frontotemporal Degeneration (AFTD) provides information, education and support for people with FTD and their caregivers. You can reach AFTD at 866.507.7222 or info@theaftd.org.

Younger people can also help research. The Longitudinal Early-Onset Alzheimer's Disease Study, known as LEADS, is studying the causes, identification and treatment of early onset Alzheimer's, and the Alzheimer's Association lists it as a way to take part.

In the early stage, the Alzheimer's Association says most people still function independently and may drive, volunteer and even work. The hardest tasks are often managing a daily schedule or a household budget. The aim is support that protects independence: cues and reminders, help with planning, and doing things together rather than for the person.

Middle stage Alzheimer's is typically the longest stage and can last many years, with more care needed as it goes on. This is often when a working spouse needs someone at home during the day. A non-medical companion can keep routines on track, go on walks and outings, share hobbies and keep the person active and social.

Respite gives the caregiver a break while the person continues to receive care in a safe setting. The Alzheimer's Association lists companion services, personal care, homemaker help, adult day centers and short overnight stays. It notes that the cost is usually not covered by insurance or Medicare, and suggests asking a local chapter about scholarships and sliding scale fees.

If you would like help finding someone, Dementia In Home is a non-medical service that sends 3 to 5 video profiles of caregivers with dementia experience within 48 hours, free. Call (689) 333-6079.