Where to Start When You or a Family Member Receives a Diagnosis

A diagnosis of Alzheimer's disease or dementia changes what you need to know and who you need to talk to, but the information and support systems exist before you need them. Your first step is not to panic or search alone — it is to contact your doctor for a referral to a neurologist or geriatrician who specializes in dementia, and to ask that doctor directly what local resources they recommend. Many practices have a social worker on staff who can point you toward programs in your area.

The Alzheimer's Association runs a 24/7 helpline at 1-800-272-3900 that connects you to local chapters, support groups, and care resources specific to your state and county. You do not need to know what you are looking for — you call and describe your situation, and they tell you what exists near you. This is faster and more accurate than searching online, because programs change, funding opens and closes, and what works in one county may not exist in the next.

At the same time, ask your doctor whether you are in the early, middle, or late stage of the disease. This matters because the resources you need now are different from the ones you will need in two years. Planning ahead prevents crisis decisions later.

Key Takeaways

  • The Alzheimer's Association helpline (1-800-272-3900) connects you to local support groups, care options, and resources in your area at no cost.
  • Your doctor or their social worker can refer you to a neurologist and to local programs, which is faster than searching online yourself.
  • Medicare covers some dementia care services, but you must ask your doctor for a referral — coverage does not happen automatically.
  • Adult day programs, respite care, and in-home support exist in most areas but have waiting lists, so contact them early even if you do not need them when ready.
  • Legal documents like a power of attorney and healthcare proxy should be completed while the person with dementia can still understand and sign them.

What Medicare and Medicaid Cover for Dementia Care

Medicare Part B covers a doctor's visit to diagnose dementia, cognitive testing, and some follow-up care if your doctor orders it. It does not automatically cover memory care or long-term support — you have to ask your doctor for specific referrals, and your doctor has to document that the service is medically necessary. If your doctor says "you should look into adult day care," that is different from "I am ordering adult day care as part of your treatment plan." The second one is what Medicare needs to see.

Medicaid, which is run by your state, covers more dementia-related services than Medicare does, but only if your income and assets fall below your state's limits. Those limits vary widely — some states allow more savings than others. If you think you might need Medicaid, contact your state's Medicaid office or call 1-800-MEDICARE to ask whether you meet the financial threshold. Do not wait until you are in crisis to find out.

Both programs cover some in-home care, adult day programs, and nursing home care, but the amount and type depend on your state, your specific diagnosis, and your doctor's orders. Neither covers all costs, and neither covers custodial care (help with bathing, dressing, meals) unless you also need skilled nursing care. This is why many families end up paying out of pocket or turning to Medicaid planning — a lawyer who specializes in elder law can explain your options.

Adult Day Programs and Respite Care: What They Are and How to Find Them

An adult day program is a place the person with dementia goes during the day — usually five days a week, usually 8 a.m. to 5 p.m. — where they are supervised, given meals, and do activities designed for their cognitive level. The real benefit is for the family caregiver: it gives you time to work, run errands, or straightforward rest. Most programs cost $50 to $150 per day, though some sliding-scale programs charge less based on income. Medicare does not cover it unless it is part of a medical treatment plan your doctor has ordered, but some Medicaid programs do.

Respite care is short-term care — a few hours, a few days, or a few weeks — so the primary caregiver can take a break. It can happen in the person's home, in an adult day program, or in a facility. The Caregiver Action Network and your local Area Agency on Aging both maintain lists of respite providers. Costs vary, and some programs offer free or reduced-cost respite for low-income families.

Both programs have waiting lists in most areas. Contact them now, even if you do not need them for six months. Ask when they expect an opening and whether you can get on the list without committing to a start date. Many families wait until they are exhausted or until a crisis forces them to find care, and by then the program is full.

In-Home Care: Hiring, Paying, and What to Expect

In-home care means someone comes to your house to help with personal care (bathing, dressing, toileting), household tasks, or both. It ranges from a few hours a week to 24-hour live-in care. You can hire through an agency, which handles payroll and insurance but costs more, or hire independently, which is cheaper but makes you the employer responsible for taxes and workers' compensation.

If you use an agency, ask whether they specialize in dementia care — not all do, and dementia requires specific training. Ask about their backup plan if your regular caregiver calls in sick. Ask what their hourly rate is and whether there are minimum hours per week. Rates vary by region and by the type of care, but typically range from $20 to $35 per hour through an agency, or $15 to $25 per hour if you hire independently.

Medicare does not cover in-home care unless it is skilled nursing (wound care, medication management) ordered by a doctor. Medicaid covers it in most states if you meet income limits. If you are paying out of pocket, ask your accountant whether you can deduct it as a medical expense. Some families use long-term care insurance if they have it, or they pay from savings until Medicaid takes over.

Legal Documents You Need Before You Need Them

A healthcare proxy (also called a healthcare power of attorney) is a document that names someone to make medical decisions for you if you cannot. A financial power of attorney lets someone manage your money and pay bills. A living will states what kind of medical care you do or do not want if you are dying. These documents must be signed while you still have the mental capacity to understand what you are signing — a doctor may need to confirm this.

If you wait until dementia is advanced, you cannot sign these documents, and your family will have to go to court to get guardianship or conservatorship, which is expensive, public, and takes months. If you do not have these documents and the person with dementia has no family, the state may appoint a guardian.

An elder law attorney can draft these documents for you. Costs vary by region and complexity, but typically range from $500 to $2,000 for a basic package. Some legal aid organizations offer free or low-cost help if you cannot afford a lawyer. Ask your local Area Agency on Aging or the Alzheimer's Association for referrals.

Support Groups and Counseling for Caregivers

Caring for someone with dementia is isolating and exhausting. Support groups — whether in person or online — connect you with other people doing the same thing. The Alzheimer's Association runs groups in most areas, organized by the stage of disease and by relationship (spouse, adult child, professional caregiver). Many groups meet weekly or monthly and are free.

Counseling or therapy can help you process grief, manage stress, and make decisions. Some therapists specialize in caregiver burnout. Your doctor can refer you, or you can search Psychology Today's therapist finder by location and specialty. Many therapists now offer video sessions, which can be easier to fit into a caregiver's schedule. Some insurance plans cover it; others do not.

The Caregiver Action Network, Family Caregiver Alliance, and the Alzheimer's Association all offer online resources, webinars, and educational materials for free. These are not a substitute for professional help if you are struggling, but they can normalize what you are experiencing and teach you practical strategies.

Planning for Long-Term Care and Nursing Homes

At some point, many families face the decision of whether to move a person with advanced dementia into a nursing home or memory care facility. This is not a failure — it is a practical decision based on the level of care needed and what the family can provide. The time to start looking is before you need to move, not in a crisis.

Visit facilities in person. Ask about their dementia-specific programs, their staff-to-resident ratio, their experience with behavioral issues, and their costs. Costs for memory care units range from $4,000 to $10,000 per month depending on location and level of care, though this varies significantly by region. Ask whether they accept Medicaid, because many do not, and if they do, whether they accept it from day one or only after private pay runs out.

Get on waiting lists early. Some facilities have waiting lists of six months to two years. You can always decline a spot, but you cannot get one if you wait until you are desperate. Ask your doctor, the Alzheimer's Association, and your local Area Agency on Aging for recommendations.

Frequently Asked Questions

How do I know if someone has dementia or just normal aging?

Normal aging means forgetting where you put your keys; dementia means forgetting what keys are for. A doctor can do cognitive testing to tell the difference. If you are worried, ask your doctor for a referral to a neurologist or geriatrician. Early diagnosis matters because some causes of dementia-like symptoms are treatable.

Can I get paid to be a caregiver for a family member?

In some states, Medicaid allows you to be paid as a caregiver for a family member, but the rules vary widely and the pay is usually low. Ask your state's Medicaid office or your local Area Agency on Aging whether your state has a consumer-directed care program. Some families also use long-term care insurance or Veterans benefits to pay a family member.

What should I do if the person with dementia wanders or gets lost?

The Alzheimer's Association runs the Safe Return program, which provides identification bracelets and a registry so police can identify and return a person who wanders. GPS tracking devices are also available. Talk to your doctor and local police about what options make sense for your situation.

How do I talk to my parent about moving to a care facility?

Have the conversation early, before dementia is severe, and focus on their preferences rather than your needs. Ask what matters to them — staying in their home, being near family, having activities — and listen. If dementia is already advanced, involve their doctor in the conversation. Some people respond better to a doctor saying "this is what I recommend" than to family saying "we think you should move."

What happens if someone with dementia refuses care or becomes aggressive?

Aggression and refusal are common in dementia and usually signal pain, fear, or confusion rather than willfulness. Tell your doctor when ready — there may be a medical cause. A dementia care specialist or geriatric psychiatrist can help you understand what is triggering the behavior and how to respond. Support groups can also teach you practical strategies.