Three Big Questions to Consider After an Alzheimer’s Diagnosis

Before trying to determine where someone will live years from now, make sure the immediate situation is understood.

Confirm what was actually diagnosed

Ask the clinician whether the diagnosis is mild cognitive impairment due to Alzheimer’s, mild Alzheimer’s dementia or a later stage of disease.

Ask what evidence supports that conclusion and whether additional testing is needed.

This distinction can influence treatment, safety recommendations and the amount of assistance the person currently needs.

Discuss current treatment options

Alzheimer’s treatment has changed significantly in recent years.

Some medications manage symptoms while the disease-modifying therapies lecanemab and donanemab can slow cognitive decline in selected people with early Alzheimer’s disease.

These treatments are not appropriate for everyone and involve eligibility requirements, amyloid confirmation, MRI monitoring and potentially serious risks.

Treatment decisions should therefore be made with a clinician experienced in Alzheimer’s care.

A diagnosis may also lead to discussion of clinical trials, symptom management and treatment of other conditions that can affect cognition or independence.

Write down the next medical steps

Families should leave the diagnostic process understanding:

• Which clinician will manage follow-up care.
• Which medications are being recommended.
• When the next appointment should occur.
• Whether driving or other activities need evaluation.
• Which symptoms should trigger an earlier medical call.

Do not mistake planning for taking control

Early-stage Alzheimer’s does not mean relatives should immediately take over the person’s banking, appointments, medications and daily choices.

The Alzheimer’s Association states that most people in the early stage still function independently and may continue driving, social activities, volunteering or working.

At this stage, the role of a care partner may be more about support, companionship and future planning than hands-on caregiving.

Support should expand as abilities change rather than removing independence simply because a diagnosis now exists.

This may be the most time-sensitive of the three questions because some legal documents require the person signing them to have a particular level of legal capacity.

That does not mean a person with Alzheimer’s automatically lacks capacity.

The Alzheimer’s Association explains that legal capacity requirements can vary from one document to another and that completing legal documents does not automatically revoke the person’s right to continue making decisions while they retain legal capacity.

An Alzheimer’s diagnosis is not the same as legal incapacity

Capacity can change as dementia progresses, and the requirements for signing one document may differ from another.

When capacity is uncertain, an attorney and healthcare professional may need to help determine whether the person understands what they are signing and the consequences of the decision.

This is one reason planning early matters.

Waiting until a financial crisis or medical emergency may leave families with fewer options and more complicated legal procedures.

Choose someone for healthcare decisions

Advance healthcare planning allows the person to document preferences and designate someone to make medical decisions if they become unable to do so.

Common planning documents can include a living will, which records certain treatment preferences, and a durable power of attorney for health care, which designates someone to make medical decisions when the person cannot.

Terminology and legal requirements differ by state, so California families should have documents reviewed under current California law.

Choose someone for financial decisions

A durable financial power of attorney may allow a trusted person to manage financial matters when needed.

Depending on the document, responsibilities may include paying bills, managing accounts, dealing with insurance or handling property.

The person selected should be trustworthy, organized and willing to take on the role.

Convenience alone is not enough.

Families beginning this process can read our guide on getting started with power of attorney.

Review documents that already exist

Do not assume planning is complete simply because Mom wrote a will 15 years ago.

Review existing:

• Advance healthcare directives.
• Financial powers of attorney.
• Wills.
• Trusts.
• Beneficiary designations.
• Insurance policies.
• Property records.
• Bank and investment accounts.

Make sure the documents still reflect the person’s wishes and that the people named in them are alive, willing and appropriate to serve.

Our overview of wills, living wills and living trusts can help families understand why these documents are not interchangeable.

Make important information accessible

Important documents should not be scattered through filing cabinets, old email accounts and safe-deposit boxes no one else can access.

Create an organized record of accounts, insurance information, debts, recurring expenses, property, important contacts and legal documents.

A trusted person should know where the information is stored and how to access it when legally appropriate.

Passwords and digital accounts also deserve attention.

Families increasingly need plans for online banking, automatic payments, email, subscription services and other digital assets.

Start estimating future care costs now

Financial planning should include more than current medical bills.

Future costs may involve medications, home modifications, paid caregiving, adult day programs, respite care, assisted living or memory care.

Families in Southern California can begin by reviewing what assisted living costs in Los Angeles and Orange County.

Actual pricing varies by location, accommodation, care level and services, but understanding the local range can make long-term planning more realistic.

It is also useful to understand different ways families pay for assisted living, including private resources, long-term-care insurance and benefits for which a person may qualify.

Review long-term-care insurance, Medicare, Medicaid or Medi-Cal eligibility, veterans benefits and other possible resources with qualified professionals.

Medicare should not be assumed to pay for unlimited long-term custodial care.

Families should be cautious about making tax or insurance decisions based only on general online information.

Some situations may justify discussing potential medical-expense deductions, life-insurance options or other funding strategies with a qualified tax, insurance or financial professional.

Do not assume the answer is obvious.

A spouse may already have health problems. The daughter who lives five miles away may have a demanding job and children at home.

A son who lives across the country may have more flexibility with finances or paperwork than the sibling who lives nearby.

No one should discover through family expectations that they have silently been appointed the full-time caregiver.

Think in terms of a care team, not one caregiver

Different people can contribute in different ways.

• One person may attend medical appointments.
• Another may manage insurance and bills.
• A nearby relative may help with groceries or meals.
• A sibling farther away may coordinate paid care.
• A friend may provide companionship or transportation.

The person with Alzheimer’s should also be included in deciding who becomes part of this team whenever possible.

Talk about what each person can realistically do

A useful family meeting involves more than asking, “Who can help Mom?”

Ask specific questions:

• Who can reliably attend appointments?
• Who is comfortable managing finances?
• Who can respond in an emergency?
• Who lives close enough to provide hands-on help?
• Who can contribute financially if paid support becomes necessary?
• Who can provide backup when the primary caregiver is sick or away?

Our guide to organizing family meetings about senior care can help relatives structure these discussions before disagreements become crises.

When siblings have very different ideas about what should happen next, our article on keeping the peace among siblings caring for a parent offers additional strategies.

Plan for needs to increase

Early in the disease, help may consist of reminders, transportation or assistance organizing appointments.

Later, the person may need help with medication management, meals, bathing, dressing, toileting or supervision.

Some people eventually require around-the-clock support.

Planning for the possibility of long-term care early can reduce the chance that the family will have to choose services during an emergency.

Understanding how dementia stages may change care needs can help families anticipate possibilities without treating a stage chart as a precise timetable.

Create a backup plan before the primary caregiver reaches a breaking point

Every care plan needs a second plan.

What happens if the spouse providing care is hospitalized? What if the adult child who handles evenings becomes unavailable? Who can step in for a weekend or a week?

Backup care might involve relatives, paid home care, adult day services or short-term residential respite.

Families should also monitor the caregiver’s health.

Irritability, exhaustion, sleep problems, social withdrawal and declining physical health may signal that the current arrangement is becoming unsustainable.

Our article on recognizing signs of caregiver burnout explains what to watch for.

Use respite care before there is an emergency

Respite is not only for families who have reached their limit.

Planned breaks can help a caregiver attend appointments, travel, sleep, spend time with other family members or simply recover.

Families can explore short-term respite support in Orange County or Los Angeles respite care.

Do not promise that someone will always remain at home

Families sometimes make promises such as, “I will never put you in a care home.”

The intention is loving, but no one can predict future medical needs, caregiver health or safety risks.

A more useful promise is, “We will keep you involved and choose the safest, most respectful care we can as your needs change.”

Most people would prefer to remain in familiar surroundings for as long as possible.

An Alzheimer’s diagnosis alone does not mean someone must immediately leave home.

The more useful question is whether the current living arrangement can continue to meet the person’s needs safely and sustainably.

Families who are uncertain how the available settings differ can begin by comparing different types of senior care.

Ask whether the current home still works

Look beyond whether the person likes the house.

Consider:

• Are stairs becoming difficult?
• Can the person prepare food safely?
• Are medications being taken correctly?
• Has the person become lost outside the home?
• Are there fall hazards?
• Can someone respond quickly in an emergency?
• Is the person becoming socially isolated?
• Can the current caregiver continue providing the necessary supervision?

NIA recommends continuing to reassess home safety as behavior and abilities change.

Its current Alzheimer’s Caregiving: Home Safety Tips guidance advises caregivers to identify immediate hazards and revisit safety needs over time.

Families concerned about mobility can also review strategies for reducing fall risk at home.

Driving may become part of the housing conversation

Where someone lives can become less practical once driving is no longer safe.

A home that once offered independence may become isolating if groceries, medical care, friends and activities are difficult to reach without a car.

Families facing that transition can review our guidance on deciding when a parent should stop driving.

Staying home may require more support than expected

Aging in place is not simply a housing decision.

It is a care-delivery plan.

Remaining at home may eventually require paid caregivers, meal support, medication supervision, transportation, home modifications, emergency systems and significant involvement from relatives.

Families should calculate whether those supports are available and financially sustainable rather than assuming staying home is automatically the simplest or least expensive option.

When family help is no longer enough, it may be time to consider hiring an in-home caregiver.

Families comparing costs, staffing and supervision can also review assisted living versus in-home care.

Assisted living may fit some needs

Assisted living can provide housing, meals, activities and support with daily tasks while preserving a level of independence.

Whether it is appropriate for someone with Alzheimer’s depends on the community, the person’s symptoms and how much dementia-specific supervision is available.

Families considering this option can read more about choosing assisted living for someone with dementia.

Local options include assisted living across Orange County and LA assisted living communities.

Memory care may become appropriate when dementia-specific needs increase

Memory care is designed for people whose cognitive impairment requires more structured routines, supervision and dementia-informed support.

Signs that a family may need to consider a higher level of care can include:

• Wandering or repeated attempts to leave home unsafely.
• Frequent medication errors.
• Unsafe cooking or household behavior.
• Increasing assistance with bathing, dressing or toileting.
• Nighttime behaviors requiring ongoing supervision.
• Repeated falls or emergencies.
• A caregiver who can no longer safely provide the required level of care.

Our guide to signs it may be time for assisted living can help families think through changes in safety, daily functioning and caregiver capacity.

The decision should reflect the person’s current function, safety and quality of life along with the caregiver’s ability to sustain the existing arrangement.

Families looking locally can explore San Clemente memory care options or review Raya’s Paradise communities throughout Los Angeles.

Do not wait for the move itself to begin researching

Visiting communities while the situation is relatively stable gives families time to compare options without the pressure of a hospitalization, wandering incident or caregiver emergency.

Researching care does not commit anyone to moving.

It creates a backup plan.

Before visiting, families can learn how to evaluate an assisted living community and use our assisted living tour checklist to compare staffing, safety, services and daily life across communities.

Families who are having difficulty raising the topic can also review our article on talking with a parent about a move to memory care.

The answers you make shortly after diagnosis are not permanent.

The person selected to manage finances may become unavailable. A spouse who expected to provide care may develop their own health problems.

A house that works well today may become unsafe two years from now. The person with Alzheimer’s may also express different preferences as circumstances change.

Good Alzheimer’s planning is therefore not one meeting or one set of documents.

It is an ongoing process.

Schedule regular family check-ins

At reasonable intervals, and whenever there is a major health or caregiving change, revisit questions such as:

• Who is currently making or helping with decisions?
• What can the person still manage independently?
• What care does the person need now?
• How is the primary caregiver coping?
• Is backup help still available?
• Is the current home still safe?
• Have costs or financial resources changed?
• Does the existing legal plan still reflect the person’s wishes?
• What does the person with Alzheimer’s want now?

Pay attention to changes, not arbitrary deadlines

There is no universal point at which every person with Alzheimer’s must stop living alone, hire a caregiver or enter memory care.

Decisions should respond to actual changes in cognition, function, behavior, health, safety and caregiver capacity.

Keep the person involved for as long as possible

Planning ahead is most valuable when it preserves choice rather than eliminating it.

Even when someone needs increasing assistance, they may still be able to express preferences about daily routines, caregivers, meals, activities, visitors and where they feel most comfortable.

The goal is not to take control of the future as quickly as possible.

It is to build enough support that the person’s wishes can continue guiding care as Alzheimer’s changes.

• National Institute on Aging. “Planning After a Dementia Diagnosis.” National Institutes of Health.
• National Institute on Aging. “Next Steps After an Alzheimer’s Diagnosis Patient Checklist.” National Institutes of Health.
• National Institute on Aging. “How Is Alzheimer’s Disease Treated?” National Institutes of Health.
• National Institute on Aging. “Alzheimer’s Caregiving: Home Safety Tips.” National Institutes of Health. Content reviewed August 2, 2024.
• Alzheimer’s Association. “Legal Planning.” Alzheimer’s Association.
• Alzheimer’s Association. “Financial Planning.” Alzheimer’s Association.
• Alzheimer’s Association. “Early-Stage Alzheimer’s and Dementia Caregiving.” Alzheimer’s Association.

Medical, financial and legal disclaimer:

This article provides general educational information and is not medical, financial or legal advice. Laws governing powers of attorney, advance directives, trusts and legal capacity vary by state and by document. A qualified elder law or estate planning attorney can provide advice based on the person’s circumstances. Medical and safety decisions should be discussed with the person’s healthcare team.