What should I do first after a dementia diagnosis?

Three priorities in the first few weeks. First, establish a coordinating clinician — ideally a geriatrician, or a primary care physician who will serve as the point person over time. Second, meet with an elder law attorney to complete or update durable power of attorney (financial and healthcare), healthcare proxy, advance directives, and possibly a will. These documents are easiest to establish while capacity is clearly preserved. Third, have direct conversations with family about caregiving roles, expectations, and financial sharing.

What legal documents do we need?

At minimum: durable power of attorney for finances, durable power of attorney for healthcare (healthcare proxy), advance directives (living will), and an up-to-date last will. Depending on circumstances, a revocable living trust, HIPAA authorization for specific family members, and Medicaid planning documents may be valuable. An elder law attorney can advise on the specific needs. The key principle: establishing these while capacity is preserved avoids later guardianship, which is more expensive, intrusive, and slower to establish.

When should we start financial planning?

As soon as possible. Long-term care insurance is generally not available once dementia is diagnosed, though existing policies can be activated later when care needs develop. Medicaid planning has a 5-year look-back period, which makes early planning valuable if asset preservation matters. VA benefits eligibility should be checked for veterans and surviving spouses. A financial planner familiar with long-term care, in coordination with an elder law attorney, is often worth consulting early. Dementia care costs typically run $250,000 to $500,000 over the full course of the disease, sometimes more.

What medical planning matters most?

Establishing a coordinating clinician who will see the person over time. Completing the diagnostic workup if not yet done. Starting appropriate medications if indicated. Addressing coexisting conditions — blood pressure, diabetes, depression, sleep apnea, hearing loss — which all affect trajectory. Reviewing current medications for anything that worsens cognition. Scheduling regular follow-up (typically every 6 months early, more often as disease progresses). Documenting baseline cognitive status for future comparison. Planning for disease-modifying therapy eligibility if Alzheimer's pathology is suspected.

Who in the family should be involved in planning?

As many of the relevant people as possible, while the person with dementia can still participate. Spouses, adult children, siblings with ongoing relationships, the person's close friends if they are part of the support network. Early alignment reduces later conflict. The person's own wishes about care should be documented while they can articulate them — this often prevents disputes later about what they would have wanted.

When should we discuss driving, memory care, and end-of-life wishes?

Earlier than most families think — ideally in the early weeks after diagnosis, while the person can participate. Driving typically continues safely in early dementia but the conversation about when to stop should happen while it's abstract rather than urgent. Memory care is often a year or more away, but researching options, getting on waitlists at good facilities, and discussing preferences early is valuable. End-of-life preferences (hospital-vs-comfort, feeding tubes, CPR, hospice) should be documented formally in advance directives. None of these conversations are easy, but having them early is easier than having them during a crisis.

How often should we revisit the plan?

Roughly annually, or whenever a significant change happens — a medical event, a functional decline, a family situation change, or a major life event. Plans made at diagnosis often need adjustment as the disease progresses. The legal documents usually don't change, but the care arrangements, financial structure, and specific plans (living situation, driving, memory care timing) typically evolve.

January 20, 202611 min read

Planning for Dementia: A Family Checklist After Diagnosis

Creator: Mai Shimada, MD
Published: Tue Jan 20 2026 00:00:00 GMT+0000 (Coordinated Universal Time)

By Mai Shimada, MD, Emergency medicine-trained physician, Founder of Tokei Health

A dementia diagnosis sets off a cascade of things to think about at exactly the time the family least wants to think about them. Getting through the early months in a structured way — rather than letting decisions pile up until crises force them — protects both the person with dementia and the family over the coming years.

This article is a practical checklist organized by priority and timeline. It links to the specific posts on this site that go deeper on each topic.

The first few weeks

Medical foundation

[ ] Confirm the diagnosis and understand what specific type of dementia is being discussed. See our Alzheimer's guide, Lewy body guide, FTD guide, vascular dementia guide, or other specific resources.
[ ] Establish a coordinating clinician who will see the person over time. A geriatrician, a primary care physician willing to take this on, or a memory clinic can play this role.
[ ] Complete the diagnostic workup if not already done. Brain MRI, thorough labs (including B12, folate, thyroid, vitamin D), medication review, and sometimes specialized testing.
[ ] Review current medications for anything that worsens cognition. Our medications post covers what to watch for.
[ ] Address coexisting conditions — blood pressure, diabetes, depression, sleep apnea, hearing loss. All affect trajectory.
[ ] Discuss medications with the clinician. Cholinesterase inhibitors? Memantine? Disease-modifying therapy (lecanemab, donanemab) if eligibility criteria are met?
[ ] Document cognitive baseline. A clock drawing test now gives a dated reference for later comparison.

Legal foundation

[ ] Schedule a visit with an elder law attorney — naela.org has a directory. Most offer fixed-fee initial consultations.
[ ] Complete or update durable power of attorney for finances. This designates who can manage financial affairs if the person becomes unable to.
[ ] Complete or update durable power of attorney for healthcare (healthcare proxy). This designates who can make medical decisions.
[ ] Complete advance directives (living will) specifying wishes for specific end-of-life situations.
[ ] Update or establish a will.
[ ] Consider a revocable living trust if the family has significant assets, for smoother estate management.
[ ] Sign HIPAA authorizations allowing specific family members to speak with clinicians about the person's medical care.
[ ] Document the person's own wishes in writing while they can articulate them — preferences for care, where they want to live, what matters to them about quality of life, specific wishes about interventions.

All of these are harder to establish later. This window is particularly important.

Family alignment

[ ] Call a family meeting (in-person or virtual) with everyone who should be involved. Often includes spouse, adult children, key siblings.
[ ] Share the diagnosis openly with those who need to know. Avoiding the topic rarely helps; it just delays adjustment.
[ ] Discuss caregiving roles and expectations explicitly. Who is the primary? Who is the point person for medical decisions? Who can provide what kind of support? What are the limits?
[ ] Discuss financial sharing if relevant. Who will pay for what if care needs exceed the person's resources?
[ ] Discuss communication — how will the family stay informed as the disease progresses? Who coordinates?
[ ] Acknowledge the emotional weight without trying to solve it in one meeting. This will be an ongoing conversation.

The first few months

Financial planning

[ ] Take inventory of the person's financial situation — income, assets, debts, existing insurance policies, retirement accounts.
[ ] Check existing insurance for long-term care coverage, life insurance with accelerated death benefits, or relevant riders.
[ ] Investigate VA benefits for veterans or surviving spouses — Aid and Attendance is a key one. VA.gov or a VSO can help assess eligibility.
[ ] Understand Medicare coverage and its limits. Medicare does not cover long-term custodial care, which is a common source of surprise. See our how to pay for dementia care post.
[ ] Consider Medicaid planning with an elder law attorney if likely to be needed. The 5-year look-back period makes early action valuable.
[ ] Set up financial monitoring — joint account access, automatic bill pay, alerts on the person's accounts to catch scams or unusual activity.
[ ] Protect against exploitation — older adults with cognitive changes are specifically targeted by scammers. Consider reducing mailbox access, taking the person off marketing lists, setting up fraud alerts.
[ ] Project future costs — roughly what might care cost in various scenarios? An elder law attorney and/or financial planner can help model.

Driving and safety

[ ] Evaluate current driving safety honestly. Early dementia often allows safe driving for years; middle-stage dementia typically does not. See our driving post.
[ ] Consider a formal driving evaluation by an occupational therapist specializing in driver rehabilitation, particularly if there are concerns.
[ ] Plan for eventually stopping driving — what transportation alternatives will be in place? Ride-sharing, family rotation, senior transportation services?
[ ] Address home safety — an occupational therapist can do a formal home safety assessment. Key areas: stove, medications, stairs, bathroom, access to firearms or power tools.
[ ] Set up medication management — pill organizers with alarms, automatic dispensing, caregiver oversight as needed.

Care planning

[ ] Assess current care needs — what help does the person need? What do they still do independently?
[ ] Identify local care resources — adult day programs, in-home aide agencies, memory care facilities for future reference. Many good facilities have waitlists.
[ ] Consider adult day programs — even if not needed now, they often become invaluable in middle stage.
[ ] Connect with the Alzheimer's Association — 1-800-272-3900 or your local chapter. They provide care consultation, support groups, and information.
[ ] Identify a geriatric care manager if the situation is complex or family lives at a distance. They can help assess, plan, and navigate transitions.
[ ] Plan for caregiver respite from the beginning, not as a crisis response. See our caregiver burnout post.

Communication and relationship

[ ] Talk with the person about what they want — preferences, fears, wishes, things that matter to them. While they can articulate it.
[ ] Capture stories, memories, and family history — this becomes harder as the disease progresses. Written, audio, or video records are all valuable.
[ ] Maintain important relationships — friends, community, social activities. These often fade without active effort; maintaining them matters.
[ ] Discuss the diagnosis with employer if the person is still working. Disability, FMLA, accommodations all become relevant.
[ ] Discuss driving and major life changes with family openly rather than waiting until a crisis forces the conversation.

The first year

Medical follow-up

[ ] Establish regular follow-up with the coordinating clinician. Typically every 6 months in early disease, more often if changes occur.
[ ] Keep a log of changes — noting specific observations helps track trajectory and inform clinician visits.
[ ] Maintain other screening and preventive care — don't let dementia eclipse the person's other medical needs.
[ ] Address mood and behavior changes promptly — depression, anxiety, sleep disruption, and early behavioral symptoms all benefit from proactive treatment.
[ ] Watch for treatable complicating factors — new medications, acute illnesses, UTIs, dental problems that can acutely worsen cognition.
[ ] Plan for medical crises — know the preferred hospital, make sure advance directives are accessible, consider a POLST/MOLST form if available in your state.

Community and support

[ ] Join a support group — caregiver groups specifically for dementia are among the most helpful interventions. In-person or virtual.
[ ] Consider therapy for the caregiver — specifically with someone familiar with caregiver burden or anticipatory grief.
[ ] Maintain the caregiver's own health — medical appointments, physical activity, sleep, social connection.
[ ] Explore activities for engagement — what does the person still enjoy? See our activities post.

Planning ahead

[ ] Research memory care facilities if this may be in the future — visit, talk with families, check inspection records. Having this research done reduces pressure if a crisis forces a decision.
[ ] Discuss hospice philosophy even though it may be years away — values around hospital vs home care, aggressive vs comfort-focused interventions. Document in advance directives.
[ ] Plan for the caregiver's own future — what will they need at various points? What has to change in their own life?

Emotional processing

[ ] Acknowledge anticipatory grief when it emerges. It is common, real, and deserves attention. See our anticipatory grief post.
[ ] Connect with others who understand — support groups, online communities, close friends with shared experience.
[ ] Give yourself permission for complicated feelings — resentment, fatigue, occasional wishes for it to be over. These are ordinary.
[ ] Find sustenance — activities, practices, relationships, routines that sustain you through years of caregiving.

As the disease progresses

The initial planning establishes foundations. Specific transitions happen over time.

Transitioning from early to middle stage

[ ] Re-evaluate care arrangements — is home still sustainable? Is more support needed?
[ ] Stop driving if not already done
[ ] Consider adult day programs for structured engagement
[ ] Safety-proof the home more extensively — locks on doors, alarm systems if wandering, automatic stove shut-offs
[ ] Simplify medication management
[ ] Focus more on symptom management — mood, sleep, behavior
[ ] Update advance directives if needed
[ ] Address caregiver sustainability more actively

Transitioning from middle to late stage

[ ] Consider memory care or full-time in-home care if home is no longer safe or sustainable
[ ] Simplify the medical plan — focus on comfort and quality of life rather than aggressive management
[ ] Discuss hospice with the clinician when appropriate — typically earlier than families expect
[ ] Address swallowing concerns with a speech-language pathologist if present
[ ] Discuss goals of care — what interventions are wanted, what are not

Late stage and hospice

[ ] Enroll in hospice when eligibility criteria are met and goals align with comfort care
[ ] Focus on sensory and relational presence — familiar voice, touch, music, being outdoors
[ ] Support the family through the final period
[ ] Acknowledge grief explicitly

See our late-stage dementia post and hospice post.

What not to worry about yet

Some things come up but don't need immediate attention:

Worrying about every specific medication — the clinician will adjust over time
Researching every possible future care setting — local options matter, not theoretical ones
Trying to memorize the entire disease trajectory — focus on the next 6-12 months and check back
Perfect decisions — most decisions in dementia care are good-enough decisions made with imperfect information. This is the nature of the situation.
Solving the whole family dynamic at one meeting — this will evolve over years
Getting the person to accept the diagnosis fully — insight often fades; some acceptance is possible, complete acceptance often isn't

When professional help is worth the fee

Several professionals often pay for themselves:

Elder law attorney — for legal documents and Medicaid planning. Usually $500-$3,000 for comprehensive planning.
Geriatric care manager — for assessment, coordination, and navigating transitions. Typically $100-$250 per hour; some agencies offer packages.
Financial planner familiar with long-term care — for projections, insurance decisions, and long-term financial structure.
A therapist experienced with caregiver burden — ongoing cost, substantial benefit over years.
A good primary care physician or geriatrician who will coordinate — often the single most important professional relationship in dementia care.

Common mistakes

A few things families commonly regret:

Waiting to establish legal documents until capacity is questionable, then needing guardianship
Not discussing the diagnosis openly with family, then having conflict later
Isolating the caregiver until burnout forces a crisis
Delaying memory care past the point of sustainability at home
Waiting until the final weeks to consider hospice
Avoiding financial planning until costs have eroded resources
Not documenting the person's own wishes while they could articulate them

The common thread: starting early is usually easier than waiting.

Resources

A consolidated list:

Alzheimer's Association helpline — 1-800-272-3900, 24-hour, free
National Academy of Elder Law Attorneys — naela.org
Your state's Area Agency on Aging — find through eldercare.acl.gov
AFTD — theaftd.org (for FTD and PPA)
Lewy Body Dementia Association — lbda.org
VA Benefits Counselor — through VA.gov or a VSO
Medicare.gov — for Medicare questions
SHIP (State Health Insurance Assistance Program) — free Medicare counseling
A geriatric care manager — find through agingcare.com or aginglifecare.org

A note on the experience itself

Plans are useful. Plans do not eliminate the difficulty. Most families navigating dementia describe a period of years where the plans they made earlier are what let them function through ongoing uncertainty. The planning does not make the disease easier; it makes responding to the disease more possible.

If you are in the early weeks after diagnosis and this list feels overwhelming, that is a reasonable response. Pick the first item or two, do them, and come back. The full list can be addressed over months. Starting at all is the important part.

References

Alzheimer's Association. 2024 Alzheimer's Disease Facts and Figures.
National Institute on Aging. Caring for a Person With Alzheimer's Disease: Your Easy-to-Use Guide.
Livingston G, Huntley J, Sommerlad A, et al. Dementia prevention, intervention, and care: 2020 report of the Lancet Commission. The Lancet. 2020;396(10248):413–446.

Disclosure: Dr. Shimada is the founder of Tokei Health. This article is informational and is not a substitute for individual medical, legal, or financial advice from a qualified professional.

Frequently Asked Questions

What should I do first after a dementia diagnosis?: Three priorities in the first few weeks. First, establish a coordinating clinician — ideally a geriatrician, or a primary care physician who will serve as the point person over time. Second, meet with an elder law attorney to complete or update durable power of attorney (financial and healthcare), healthcare proxy, advance directives, and possibly a will. These documents are easiest to establish while capacity is clearly preserved. Third, have direct conversations with family about caregiving roles, expectations, and financial sharing.
What legal documents do we need?: At minimum: durable power of attorney for finances, durable power of attorney for healthcare (healthcare proxy), advance directives (living will), and an up-to-date last will. Depending on circumstances, a revocable living trust, HIPAA authorization for specific family members, and Medicaid planning documents may be valuable. An elder law attorney can advise on the specific needs. The key principle: establishing these while capacity is preserved avoids later guardianship, which is more expensive, intrusive, and slower to establish.
When should we start financial planning?: As soon as possible. Long-term care insurance is generally not available once dementia is diagnosed, though existing policies can be activated later when care needs develop. Medicaid planning has a 5-year look-back period, which makes early planning valuable if asset preservation matters. VA benefits eligibility should be checked for veterans and surviving spouses. A financial planner familiar with long-term care, in coordination with an elder law attorney, is often worth consulting early. Dementia care costs typically run $250,000 to $500,000 over the full course of the disease, sometimes more.
What medical planning matters most?: Establishing a coordinating clinician who will see the person over time. Completing the diagnostic workup if not yet done. Starting appropriate medications if indicated. Addressing coexisting conditions — blood pressure, diabetes, depression, sleep apnea, hearing loss — which all affect trajectory. Reviewing current medications for anything that worsens cognition. Scheduling regular follow-up (typically every 6 months early, more often as disease progresses). Documenting baseline cognitive status for future comparison. Planning for disease-modifying therapy eligibility if Alzheimer's pathology is suspected.
Who in the family should be involved in planning?: As many of the relevant people as possible, while the person with dementia can still participate. Spouses, adult children, siblings with ongoing relationships, the person's close friends if they are part of the support network. Early alignment reduces later conflict. The person's own wishes about care should be documented while they can articulate them — this often prevents disputes later about what they would have wanted.
When should we discuss driving, memory care, and end-of-life wishes?: Earlier than most families think — ideally in the early weeks after diagnosis, while the person can participate. Driving typically continues safely in early dementia but the conversation about when to stop should happen while it's abstract rather than urgent. Memory care is often a year or more away, but researching options, getting on waitlists at good facilities, and discussing preferences early is valuable. End-of-life preferences (hospital-vs-comfort, feeding tubes, CPR, hospice) should be documented formally in advance directives. None of these conversations are easy, but having them early is easier than having them during a crisis.
How often should we revisit the plan?: Roughly annually, or whenever a significant change happens — a medical event, a functional decline, a family situation change, or a major life event. Plans made at diagnosis often need adjustment as the disease progresses. The legal documents usually don't change, but the care arrangements, financial structure, and specific plans (living situation, driving, memory care timing) typically evolve.

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