Chapter 15: Legal, Financial, and Support Resources

Introduction

A dementia diagnosis affects not just the individual but the entire support system—family, finances, legal matters, healthcare, and community connections. Navigating this complex landscape can feel overwhelming, especially when you're also providing daily care and managing emotions.

This comprehensive chapter serves as your resource guide through the essential legal, financial, and support systems you'll need throughout the dementia journey. From establishing legal documents early in the disease to choosing care facilities later, from understanding Medicare coverage to finding emotional support—this chapter provides practical information to help you make informed decisions and access the resources available to you.

The Importance of Early Planning: Many legal and financial decisions are best made early in the disease when the person with dementia can still participate in the planning. Don't wait for a crisis to address these critical issues.

Part I: Legal Planning and Documents

Proper legal planning protects the person with dementia, empowers trusted individuals to make decisions when needed, and prevents family conflict. These documents should be established as early as possible after diagnosis.

1. Power of Attorney (POA)

A Power of Attorney is a legal document that allows someone (the "agent" or "attorney-in-fact") to make decisions and take actions on behalf of another person (the "principal").

Types of Power of Attorney:

General Power of Attorney: - Broad authority over financial and legal matters - Can handle banking, bills, taxes, property - Typically ends if person becomes incapacitated - Not ideal for dementia planning

Durable Power of Attorney: - Remains in effect even after incapacitation - "Durable" is the key word for dementia planning - Essential for managing affairs throughout disease - This is what you want for dementia care

Springing Power of Attorney: - Only goes into effect upon specific event (usually incapacitation) - Requires certification of incapacity (can cause delays) - May be challenged more easily - Less commonly used than durable POA

When to Establish: - As soon as possible after diagnosis - While person still has legal capacity - Before moderate-stage dementia - Ideally along with other advance directives

What the Agent Can Do: - Pay bills and manage bank accounts - File taxes - Manage investments - Buy, sell, or manage property - Apply for government benefits - Handle insurance claims - Make legal decisions - Hire professionals (accountants, lawyers)

Choosing an Agent: - Someone trustworthy and responsible - Financially literate - Available and willing - Able to keep records and communicate with family - Often a spouse, adult child, or trusted friend - Can name co-agents (act together) or successor agents (backups)

Legal Requirements: - Person must have legal capacity at time of signing - Must be signed by the principal - Must be witnessed (requirements vary by state) - Often requires notarization - Some states require specific forms - Check state-specific requirements

Cost: - DIY forms: \(0-\)50 (available online or office supply stores) - Attorney preparation: \(200-\)400 - Worth hiring attorney to ensure it's done correctly

Important Considerations: - POA ends at death (estate then managed by executor/will) - Agent has fiduciary duty (must act in principal's best interest) - Agent must keep records of all transactions - Can be revoked while principal has capacity - Original documents should be kept safe; provide copies as needed - Financial institutions may require their own forms in addition to POA

2. Healthcare Proxy (Healthcare Power of Attorney)

A Healthcare Proxy (also called Healthcare Power of Attorney or Medical POA) designates someone to make medical decisions when the person cannot.

What It Is: - Legal document naming a healthcare agent - Agent makes medical decisions if person is incapacitated - Separate from financial power of attorney - Different from living will (which states wishes, not who decides)

When It Activates: - When person cannot communicate their wishes - When doctor certifies person lacks capacity to make medical decisions - Temporarily during medical emergencies - Permanently in later stages of dementia

What the Healthcare Agent Can Do: - Consent to or refuse medical treatment - Choose doctors and facilities - Access medical records - Make end-of-life decisions (if authority granted) - Decide about hospitalization - Make decisions about surgery, medications, procedures

Choosing a Healthcare Agent: - Someone who knows your values and wishes - Able to advocate for you - Can handle stress and make difficult decisions - Available and willing - Comfortable discussing end-of-life issues - Often spouse, adult child, trusted friend - Name alternate agents (successors)

How to Prepare: 1. Discuss your values and wishes with chosen agent 2. Cover specific scenarios (CPR, feeding tubes, ventilators) 3. Complete healthcare proxy form (state-specific) 4. Sign in presence of witnesses/notary (state requirements vary) 5. Give copies to agent, doctors, hospital, family 6. Keep original in accessible location 7. Bring copy to all medical appointments

Important Discussions to Have: - Quality of life vs. length of life priorities - Acceptable medical interventions - Religious/spiritual considerations - CPR preferences - Artificial nutrition/hydration - Ventilator use - Hospitalization vs. comfort care - Organ donation - Autopsy preferences

Legal Requirements: - Person must have capacity at signing - State-specific forms (check requirements) - Witnesses required (typically 2, not including agent) - Some states require notarization - May need separate form for mental health decisions

Differences from Living Will: - Healthcare Proxy: Names WHO decides - Living Will: States WHAT you want - Best to have both

3. Living Will

A Living Will is a written statement of your wishes regarding medical treatment in specific situations, particularly end-of-life care.

What It Is: - Legal document stating your healthcare wishes - Focuses on end-of-life and serious illness scenarios - Provides guidance when you can't communicate - Instructs doctors and family about your preferences - Also called "Advance Directive for Healthcare"

What It Typically Addresses:

Life-Sustaining Treatments: - Cardiopulmonary resuscitation (CPR) - Mechanical ventilation (breathing machine) - Artificial nutrition and hydration (feeding tubes) - Dialysis - Antibiotics for infections - Blood transfusions - Organ donation

Situations Covered: - Terminal illness with no hope of recovery - Permanent unconsciousness/vegetative state - Advanced dementia with complications - Conditions where burdens outweigh benefits

What You Can Specify:

"If I am in a terminal condition with no reasonable hope of recovery, I want": - All life-sustaining treatment - Life-sustaining treatment for trial period - Comfort care only (no life-prolonging measures) - Specific treatments accepted or refused

Creating a Living Will: 1. Consider your values, beliefs, and priorities 2. Discuss with family, healthcare proxy, doctor 3. Use state-specific form or attorney 4. Be as specific or general as you prefer 5. Sign with required witnesses/notarization 6. Distribute copies to healthcare proxy, doctors, hospital, family 7. Keep original accessible 8. Review and update periodically

Important Considerations: - Must have capacity when creating - Can be changed or revoked at any time (while you have capacity) - Doctors are legally required to follow it - More specific instructions are clearer but less flexible - Balance specificity with allowing agent to adapt to situations - Discuss with doctor to ensure medically appropriate

Limitations: - Cannot cover every possible scenario - Medical situations may not match those described - Healthcare proxy makes decisions in situations not covered - Some treatments may not be available or appropriate

Five Wishes (popular living will document): - Available at FiveWishes.org - Covers medical, personal, emotional, and spiritual needs - Legal in most states - Easy-to-understand language - Costs $5

4. Advance Directives

Advance Directives is an umbrella term for legal documents that communicate your healthcare wishes if you become unable to make decisions.

What's Included: - Living Will (treatment preferences) - Healthcare Proxy/Medical POA (who decides) - Do Not Resuscitate (DNR) orders - Physician Orders for Life-Sustaining Treatment (POLST/MOLST) - Organ donation designation - Mental health advance directive (in some states)

Purpose: - Ensure your wishes are known and followed - Guide family and doctors in decision-making - Prevent family conflict over decisions - Provide legal protection for healthcare proxy - Reduce guilt and stress for decision-makers - Honor your autonomy

When to Create Advance Directives: - As early as possible after dementia diagnosis - While person still has capacity - Before any medical crisis - Ideally, everyone over 18 should have them - Update periodically or when circumstances change

Legal Requirements: - Vary significantly by state - Must have capacity when signing - Specific forms may be required - Witness and/or notary requirements - Check state-specific rules

Distributing Advance Directives:

Must Have Copies: - Healthcare proxy/agent - Primary care doctor - Specialists - Hospital/medical system - Any facility where receiving care

Should Have Copies: - Family members - Attorney - Close friends who might be involved in care

Keep Originals: - Accessible location at home (not safe deposit box) - With important papers - Note location in wallet card

Updating Advance Directives: - Review every 5 years or when: - Health status changes significantly - You change your mind about preferences - You move to a different state - Your healthcare proxy is unavailable - Family circumstances change - Date and initial changes, or create new document

POLST/MOLST Forms:

What They Are: - Physician Orders for Life-Sustaining Treatment (POLST) - Medical Orders for Life-Sustaining Treatment (MOLST) - Medical orders (not just directives) - Brightly colored form (often pink or bright green) - Signed by doctor - Immediately actionable by emergency personnel

When Used: - Serious advanced illness - Late-stage dementia - Approaching end of life - When you want EMS to follow specific orders

What They Cover: - CPR (yes or no) - Medical interventions (full treatment, selective, comfort-focused) - Antibiotics (yes, no, trial) - Artificially administered nutrition - Additional orders

POLST vs. Advance Directives: - POLST: Doctor's orders, immediately actionable - Advance Directives: Legal documents with broader scope - POLST: For people with serious illness - Advance Directives: For everyone - Have both; they complement each other

5. Guardianship

Guardianship is a legal process where a court appoints someone to make decisions for a person (the "ward") who is deemed incapacitated.

When Guardianship May Be Necessary: - Person didn't establish POA before losing capacity - Named agent is unavailable, unwilling, or acting improperly - Family disputes over who should make decisions - Person is making dangerous decisions and won't accept help - Need court authority to place person in care facility against their will - Financial exploitation is occurring

Types of Guardianship:

Guardian of the Person: - Makes personal and healthcare decisions - Where person lives - Medical treatment - Daily care - Similar to healthcare proxy but court-ordered

Guardian of the Estate (Conservator): - Manages financial affairs - Similar to financial POA but court-ordered - See Conservatorship section

Full vs. Limited Guardianship: - Full: Guardian makes all decisions - Limited: Court specifies which decisions guardian can make - Courts prefer limited guardianship when possible

The Guardianship Process:

1. Petition Filed: Family member or interested party petitions court
2. Medical Evaluation: Doctor examines person and provides capacity assessment
3. Notice Given: Person and interested parties notified of proceedings
4. Hearing: Court hearing where evidence is presented
5. Person's Right to Attend: Person has right to attend, have attorney, contest
6. Court Decision: Judge determines if guardianship needed and who should be appointed
7. Guardian Appointed: Court issues letters of guardianship

Cost: - Attorney fees: \(3,000-\)10,000+ - Court costs and filing fees: \(200-\)500 - Medical evaluations: \(500-\)2,000 - Ongoing guardian fees if professional guardian appointed - Annual reporting requirements

Guardian Responsibilities: - Act in ward's best interest - Make decisions according to ward's known wishes when possible - File regular reports with court - Keep ward's property and finances separate from own - Visit ward regularly - Seek less restrictive alternatives when appropriate

Disadvantages of Guardianship: - Expensive and time-consuming - Public court process (loss of privacy) - Person loses autonomy and rights - Ongoing court supervision - Annual reporting requirements - Can be contested and challenged - May cause family conflict

Alternatives to Guardianship: - Representative payee (for Social Security) - Special needs trust - Supported decision-making agreements - Case management services - Voluntary placement in care facility

When to Consider Guardianship: - Only as last resort - When person poses danger to self or others - When less restrictive measures have failed - When person is being exploited and won't accept help - When family conflict prevents other solutions

6. Conservatorship

Conservatorship is a legal proceeding where the court appoints someone (the conservator) to manage the financial affairs of a person (the conservatee) who cannot manage their own finances.

What Is Conservatorship: - Court-appointed financial management - Similar to guardianship but focuses on finances - Conservator manages money, property, assets - Court supervised - Also called "Guardian of the Estate" in some states

When Conservatorship May Be Needed: - No durable POA in place before incapacity - POA agent is mismanaging funds - Significant financial assets requiring court protection - Person being financially exploited - Estate litigation or complex financial matters - Family disputes over finances

Conservator Responsibilities: - Manage all financial affairs - Pay bills - File taxes - Manage investments - Protect assets - Make financial decisions - Create budget - Keep detailed records - File annual accountings with court - Get court approval for major transactions

The Conservatorship Process: 1. Petition filed with court 2. Notice to proposed conservatee and family 3. Medical/capacity evaluation 4. Court investigator reviews situation 5. Court hearing 6. Judge appoints conservator 7. Conservator posts bond (insurance) 8. Letters of conservatorship issued

Types: - Limited: Conservator manages only specific assets or areas - General: Conservator manages all financial affairs - Temporary: Short-term emergency conservatorship

Professional vs. Family Conservator:

Family Member: - Usually no fee (but can request compensation) - Knows the person and their wishes - May lack financial expertise - Potential for family conflict

Professional Conservator: - Charges fees (from estate) - Experienced in financial management - Neutral party (reduces family conflict) - More expensive - Less personal connection

Court Supervision: - Annual accounting required (detailed financial report) - Court approval needed for major transactions - Court investigator may visit conservatee - Conservatee can petition for removal of conservator - Ongoing court fees

Costs: - Initial establishment: \(5,000-\)15,000 - Bond premium: \(100-\)500 annually - Professional conservator fees: \(75-\)150/hour or percentage of estate - Annual accounting preparation: \(1,000-\)3,000 - Ongoing attorney fees as needed - All costs typically paid from conservatee's estate

Avoiding Conservatorship: - Establish durable POA early - Use joint bank accounts with trusted family member - Set up trusts - Name successor trustees - Use representative payee for Social Security - Plan early while person has capacity

Conservatorship vs. Power of Attorney: - POA: Established by person before incapacity, private, less expensive, no court supervision - Conservatorship: Court-ordered, public, expensive, court-supervised, used when POA not available

Part II: Financial Planning and Resources

Dementia care is expensive. Understanding financial resources, insurance coverage, and planning strategies is essential for managing costs.

7. Estate Planning

Estate planning ensures your assets are distributed according to your wishes after death and can minimize taxes and probate costs.

Key Estate Planning Documents:

Will: - Legal document specifying how assets distributed after death - Names executor to manage estate - Can name guardian for minor children - Specify burial wishes - Must go through probate (court process) - Everyone should have a will

Trust: - Legal entity that holds assets - Revocable living trust: Can be changed, avoids probate, maintains privacy - Irrevocable trust: Cannot be changed, may protect assets from Medicaid spend-down - Trustee manages assets according to trust terms - Beneficiaries receive assets according to trust

Beneficiary Designations: - Retirement accounts (401k, IRA) - Life insurance policies - Bank accounts with TOD/POD (Transfer/Payable on Death) - Supersede will - Review and update regularly

Estate Planning for Dementia:

Early Planning Is Critical: - Must have capacity to create legal documents - Complex decisions best made before cognitive decline - Consider future care costs - Protect assets for spouse if applicable

Special Considerations: - Long-term care costs can deplete estate - Medicaid planning may be necessary - Asset protection strategies - Special needs trusts for spouse or children - Consider costs of care for years or decades

Executor Responsibilities: - File will with court - Manage probate process - Pay debts and taxes - Distribute assets to beneficiaries - Requires time and organizational skills - Choose someone trustworthy and capable

Estate Tax Considerations: - Federal estate tax applies to estates over $13.61 million (2024) - Some states have estate or inheritance taxes at lower thresholds - Married couples can combine exemptions - Complex estates require attorney advice

Reviewing Estate Plan: - Every 3-5 years - After major life changes (marriage, divorce, death, birth) - When move to different state - After substantial change in assets - When executor or trustee unavailable

Working with Professionals: - Estate planning attorney (essential for complex situations) - Financial planner - Tax advisor - Elder law attorney (specialized in dementia care planning)

Costs: - Simple will: \(200-\)1,000 - Revocable living trust: \(1,500-\)3,000 - Complex estate plan: \(3,000-\)10,000+ - Well worth the investment for peace of mind and asset protection

8. Medicaid Planning

Medicaid pays for long-term care for people who meet income and asset requirements. Medicaid planning helps preserve assets while qualifying for benefits.

What Medicaid Covers: - Nursing home care - Some assisted living (in some states) - Home and community-based services (varies by state) - Medical services - Does NOT typically cover memory care unless in nursing home

Medicaid vs. Medicare: - Medicare: Health insurance for 65+, covers medical care, very limited long-term care - Medicaid: Means-tested program, covers long-term care for those with limited resources

Eligibility Requirements:

Income Limits: - Must have low income (limits vary by state) - Typically around $2,900/month for individual (2024) - Income-producing assets counted - Community spouse can keep some income

Asset Limits: - Must have limited countable assets - Typically $2,000 for individual, $148,620 for spouse (2024, varies by state) - Home, car, personal belongings usually exempt - Must spend down assets to qualify

Look-Back Period: - Medicaid reviews 5 years of financial transactions - Gifts or asset transfers during look-back period cause penalties - Penalty period = value of gift ÷ average monthly nursing home cost in your state - Planning must begin well in advance

Exempt Assets (not counted toward limit): - Primary residence (up to equity limit, varies by state) - One vehicle - Personal belongings and household items - Prepaid funeral and burial plots - Small amount of life insurance - Irrevocable funeral trust

Medicaid Planning Strategies:

Spend Down: - Pay off debts - Make home repairs - Buy exempt assets (car, prepaid funeral) - Pay for care privately until assets depleted - Simplest but loses assets

Spousal Protections: - Community Spouse Resource Allowance (CSRA): Spouse can keep more assets - Minimum Monthly Maintenance Needs Allowance (MMMNA): Spouse can keep more income - Home is protected if spouse lives there

Medicaid-Compliant Annuities: - Convert countable assets to income stream - Must meet specific requirements - Can protect assets for community spouse - Complex, requires expert advice

Irrevocable Trusts: - Transfer assets to irrevocable trust - Assets no longer counted after look-back period - Lose control of assets - Must plan 5+ years in advance

Caregiver Child Exception: - Transfer home to adult child who provided care for 2+ years - Allows person to stay at home and avoid nursing home - Specific requirements must be met

Spend-Down Planning: - Purchase of exempt assets - Paying off debts - Home improvements - Medical equipment

When to Start Medicaid Planning: - Ideally 5+ years before needing nursing home - As soon as dementia diagnosed (if considering) - Before spending all assets on care - Immediately if crisis (some strategies still available)

Working with Elder Law Attorney: - Medicaid planning is complex - State rules vary significantly - Mistakes can be very costly - Attorney fees typically \(3,000-\)5,000 for planning - Well worth the cost to protect assets

Applying for Medicaid: - Complex application process - Extensive documentation required - Bank statements, property records, insurance policies - Can take 45-90 days - Elder law attorney can assist

Ethical Considerations: - Some view Medicaid planning as improper - Others see it as taking advantage of legal protections - Consider your own values - Remember: Medicaid is a legal safety net

9. Medicare Coverage

Medicare is the federal health insurance program for people 65 and older. Understanding what Medicare covers—and doesn't cover—is essential for planning.

Medicare Parts:

Part A (Hospital Insurance): - Hospital stays - Skilled nursing facility (LIMITED—up to 100 days with conditions) - Hospice care - Some home healthcare - Most people don't pay premium (paid through payroll taxes)

Part B (Medical Insurance): - Doctor visits - Outpatient care - Medical equipment - Preventive services - Standard premium: $174.70/month (2024, higher for high income)

Part C (Medicare Advantage): - Private insurance alternative to Original Medicare - Covers everything in Parts A and B - Often includes Part D (prescription drugs) - May include extra benefits (dental, vision, hearing) - Limited to network providers - Requires paying Part B premium plus plan premium

Part D (Prescription Drug Coverage): - Prescription drug coverage - Optional (unless have Part C with drug coverage) - Offered by private insurers - Must enroll during enrollment periods or face penalties - Premiums and coverage vary by plan

What Medicare Does NOT Cover:

Long-Term Care: - Custodial care (help with ADLs) - Assisted living facilities - Memory care facilities - Most nursing home care - This is the biggest gap for dementia care

Other Exclusions: - Dental care (most services) - Routine vision care and eyeglasses - Hearing aids - Long-term medications for chronic conditions (covered by Part D)

What Medicare Covers for Dementia: - Doctor visits and specialist consultations - Diagnostic tests and imaging - Hospital stays - Medications (Part D) - Mental health services - Limited home healthcare (must be homebound and need skilled services) - Hospice (when life expectancy 6 months or less)

Skilled Nursing Facility Coverage (Important Limitation):

Requirements: - Must have 3-day qualifying hospital stay first - Must need skilled nursing or therapy daily - Must be improving (rehabilitation focus) - Not for custodial care

Coverage: - Days 1-20: Medicare pays 100% - Days 21-100: Medicare pays most, patient pays $204/day (2024) - After day 100: Medicare pays nothing

Reality for Dementia: - Most dementia patients don't meet "improving" requirement - Coverage is rehabilitation-focused, not long-term care - Average covered stay is much less than 100 days

Medigap (Medicare Supplement Insurance): - Private insurance that fills gaps in Original Medicare - Pays deductibles, copays, coinsurance - Does NOT cover long-term custodial care - Must have Original Medicare (not Medicare Advantage) - Premiums vary (\(100-\)300/month typical)

Medicare Annual Enrollment Period: - October 15 - December 7 each year - Change Medicare Advantage plans or Part D - Return to Original Medicare from Advantage - Review plans annually (premiums and coverage change)

Resources: - Medicare.gov - Official site - 1-800-MEDICARE (1-800-633-4227) - State Health Insurance Assistance Program (SHIP) - Free local counseling

10. Long-Term Care Insurance

Long-Term Care (LTC) Insurance pays for custodial care that Medicare and regular health insurance don't cover.

What LTC Insurance Covers: - Nursing home care - Assisted living facilities - Memory care units - Home care services - Adult day care - Respite care - Care coordination

When to Buy: - Ideal: Ages 50-65 - Younger = lower premiums - Must be healthy to qualify - Cannot buy after dementia diagnosis (will be denied) - Too young = paying premiums for decades before use - Too old = very expensive or uninsurable

Cost: - Varies widely based on age, health, coverage - Average: \(1,500-\)3,000/year at age 55 - Can reach \(5,000-\)8,000/year at age 70 - Premiums can increase over time - Expensive, but less than cost of care without it

Policy Features to Consider:

Daily or Monthly Benefit: - How much policy pays per day or month - Typical: \(150-\)300/day or \(4,500-\)9,000/month - Choose amount based on care costs in your area

Benefit Period: - How long policy pays - Options: 2 years, 3 years, 5 years, lifetime - Longer period = higher premium - Average nursing home stay is 2-3 years - Consider 3-5 years for balance

Elimination Period (waiting period): - How long before benefits begin - Typical: 30, 60, 90, or 180 days - Longer elimination period = lower premium - You pay out-of-pocket during elimination period

Inflation Protection: - Increases benefit amount annually - Essential given rising care costs - Typical: 3-5% compound annual increase - Significantly increases premium but very important

Type of Care Covered: - Facility only (nursing home) - Home care only - Comprehensive (both facility and home care) - Comprehensive is more expensive but more flexible

Benefit Triggers: - When policy starts paying - Typical: Unable to perform 2 of 6 ADLs (Activities of Daily Living) - Or cognitive impairment requiring substantial supervision - Must meet criteria to collect benefits

Alternatives to Traditional LTC Insurance:

Hybrid Life Insurance with LTC Rider: - Life insurance policy with LTC benefits - If don't use LTC benefits, death benefit paid to heirs - More expensive upfront but guaranteed - May be easier to qualify for than traditional LTC insurance

Annuity with LTC Benefits: - Deposit lump sum in annuity - Can access for LTC if needed - If don't use, money remains in annuity - Less common

Pros of LTC Insurance: - Protects assets from being depleted by care costs - Provides more care options - Reduces burden on family - Peace of mind - May allow staying home longer

Cons of LTC Insurance: - Expensive premiums - May never use benefits - Premiums can increase - Must qualify (healthy when buying) - Complex policies with restrictions - Some companies have exited market

Who Should Consider LTC Insurance: - People with \(100,000-\)2 million in assets - Too poor: Qualify for Medicaid without insurance - Too rich: Can self-insure (pay costs out of pocket) - Middle class most benefit from LTC insurance - Those who want to protect inheritance for heirs

Who Should Not Buy: - Cannot afford premiums - Very limited assets (will qualify for Medicaid anyway) - Very high net worth (can afford to pay for care) - Serious health conditions (may not qualify)

Applying for LTC Insurance: - Health questionnaire - May require medical exam - Underwriting process (can take weeks) - Can be denied for health reasons - Higher premiums if health issues - Buy while healthy

Using Benefits: - Must meet benefit triggers (2 ADLs or cognitive impairment) - Doctor certification required - Submit claims for reimbursement - Some policies pay facility directly - Keep detailed records

Part III: Healthcare Coordination

Managing dementia requires coordinating with multiple healthcare providers. Building and managing your healthcare team is essential.

11. Primary Care Physician (PCP)

The Primary Care Physician is the central coordinator of healthcare, managing overall health and referring to specialists.

Role in Dementia Care: - First point of contact for health concerns - Orders initial cognitive testing - Refers to specialists (neurologist, geriatrician) - Manages chronic conditions (diabetes, hypertension) - Prescribes routine medications - Provides preventive care - Coordinates care between specialists - May prescribe dementia medications

When to Involve PCP: - First signs of cognitive changes - Regular health maintenance - New health concerns - Medication management - Referrals to specialists - Routine monitoring of dementia progression

What to Discuss: - Cognitive changes observed - Medication side effects - Other health conditions - Preventive care (vaccines, screenings) - Safety concerns (driving, falls) - Advance directives and end-of-life planning

Preparing for Appointments: - List of current medications (or bring bottles) - List of questions and concerns - Recent cognitive changes or specific examples - Bring family member or caregiver - Request longer appointment time if needed - Bring healthcare proxy documents

Communication Tips: - Be honest about challenges - Ask questions until you understand - Take notes or record (with permission) - Request written instructions - Ask for referrals when needed - Follow up as recommended

12. Neurologist

A neurologist is a doctor specializing in brain and nervous system disorders, including dementia.

Role in Dementia Care: - Diagnose dementia and determine type - Order brain imaging and specialized testing - Prescribe dementia-specific medications - Monitor disease progression - Manage neurological symptoms - Provide expert consultation - Differentiate dementia from other conditions

When to See Neurologist: - Initial diagnosis - Determining dementia type - Unusual symptoms or rapid progression - Medication management issues - Second opinion - Periodic monitoring (annually or as needed) - Seizures or other neurological symptoms

What to Expect: - Detailed medical history - Neurological examination - Cognitive testing - Review of imaging and lab results - Discussion of diagnosis and prognosis - Treatment recommendations - Follow-up plan

Diagnostic Tools Neurologist May Use: - MRI or CT brain scans - PET scans (for some dementia types) - EEG (brain wave test) - Lumbar puncture (spinal tap) in some cases - Neuropsychological testing - Genetic testing (for certain dementias)

Questions to Ask: - What type of dementia is it? - What is the expected progression? - What medications are recommended? - What side effects should we watch for? - When should we follow up? - What symptoms should we report immediately? - Are there clinical trials to consider?

Cost Considerations: - Usually covered by Medicare/insurance - May require specialist copay - Advanced testing may require pre-authorization - May not need frequent visits once diagnosis established

13. Geriatrician

A geriatrician is a doctor specializing in healthcare for older adults, with expertise in complex medical and social needs of aging.

What Makes Geriatricians Different: - Specialized training in aging - Focus on quality of life - Expertise in multiple chronic conditions - Understanding of medication management in elderly - Holistic approach to care - Address cognitive, physical, emotional, and social needs - Often spend more time with patients

Role in Dementia Care: - Comprehensive geriatric assessment - Manage multiple chronic conditions common in elderly - Medication optimization and deprescribing - Functional assessment - Fall prevention - Caregiver support and education - End-of-life planning - May provide primary care for older adults

When to Consider Geriatrician: - Person has multiple chronic conditions - Polypharmacy (taking many medications) - Frequent falls or hospitalizations - Complex care needs - Want comprehensive aging-focused care - PCP not comfortable managing dementia - Need care coordination

Comprehensive Geriatric Assessment Includes: - Medical history and physical exam - Medication review - Cognitive testing - Functional assessment (ADLs, IADLs) - Mental health screening - Social support assessment - Nutritional assessment - Home safety evaluation

Benefits of Geriatrician: - Expertise in dementia care - Focus on function and quality of life - Reduce unnecessary medications - Prevent hospitalizations - Coordinate with multiple specialists - Understand caregiver needs - Age-appropriate care

Finding a Geriatrician: - American Geriatrics Society: HealthInAging.org - Ask for referral from PCP - Check with insurance for in-network providers - May have long wait for appointments - Not all areas have geriatricians available

Limitations: - Shortage of geriatricians in U.S. - May not be available in rural areas - May have long wait times - May not accept Medicare (some) - Usually cannot provide specialty care (still need neurologist, etc.)

14. Care Coordination

Care coordination is the organization of patient care activities and communication between all participants in a person's care to facilitate appropriate delivery of services.

Why Care Coordination Matters: - Dementia care involves multiple providers - Prevents duplicate tests or conflicting treatments - Ensures all providers have current information - Reduces errors and hospital readmissions - Improves outcomes - Reduces caregiver burden

Who Coordinates Care: - Primary care physician (ideally) - Geriatrician - Nurse care manager - Social worker - Professional care manager (private pay) - Family caregiver (often falls to them by default)

What Care Coordination Involves: - Communication between all providers - Medication reconciliation (ensuring all doctors know all meds) - Scheduling and attending appointments - Tracking test results - Implementing treatment plans - Monitoring for changes - Arranging services (home care, equipment) - Navigating insurance - Connecting to community resources

Care Coordination Challenges: - Multiple specialists not communicating - Electronic health records not shared between systems - Family members receiving conflicting advice - No one taking overall responsibility - Caregiver overwhelmed with coordination tasks - Insurance authorization and paperwork

Improving Care Coordination:

Keep Master Lists: - All medications with doses and schedules - All providers with contact information - Recent tests and results - Current diagnoses - Allergies - Emergency contacts

Centralized Communication: - Designate one family member as healthcare contact - Use shared online document for updates - Inform all providers who to contact - Request all providers send information to PCP

Bring Complete Information: - Medication list to every appointment - Update providers on what other doctors said - Bring copy of advance directives - Share relevant test results

Use Patient Portal: - Access medical records online - View test results - Send messages to providers - Request prescription refills

Professional Care Manager: - Private pay (not covered by insurance) - Usually nurse or social worker - Coordinates all aspects of care - Attends appointments - Monitors care - Communicates with family - Cost: \(75-\)200/hour - Worth considering if family cannot coordinate

Care Coordination Services Through Insurance: - Some Medicare Advantage plans offer care coordination - Chronic Care Management (CCM) - Medicare benefit for multiple chronic conditions - Case management through insurance - Nurse hotline - Usually free or low-cost

15. Healthcare Team

The healthcare team includes all professionals involved in dementia care—medical, therapeutic, and supportive services.

Core Healthcare Team Members:

Medical: - Primary care physician - Neurologist or geriatrician - Psychiatrist (if behavioral symptoms) - Dentist - Ophthalmologist - Audiologist - Pharmacist

Therapy: - Physical therapist (mobility, fall prevention) - Occupational therapist (daily living skills, home safety) - Speech therapist (swallowing, communication) - Music or art therapist

Mental Health: - Psychologist or counselor - Social worker - Support group facilitator

Home and Community: - Home health nurse - Home health aide/CNA - Adult day care staff - Respite care providers

Building Your Healthcare Team:

Start with Core Team: - Primary care doctor or geriatrician - Neurologist for diagnosis - Add specialists as needed

Get Referrals: - Ask doctors for recommendations - Alzheimer's Association can provide local resources - Other families' recommendations valuable

Evaluate Providers: - Knowledge of dementia care - Communication style - Accessibility and availability - Covered by insurance - Listen to your concerns - Include family in discussions

Team Communication: - Ensure all team members have complete information - Request providers communicate with each other - Bring updates from one provider to others - Use medical records portal - Family member as coordinator

When to Add Team Members: - Behavioral symptoms: Psychiatrist - Swallowing issues: Speech therapist - Mobility problems: Physical therapist - Safety concerns: Occupational therapist - Depression or anxiety: Counselor or psychologist - Home care needs: Home health agency - Caregiver stress: Social worker, support group

Maximizing Team Effectiveness: - Regular team meetings (if possible) - Clear care plan shared by all - Designated point person for communication - Open communication between team members - Regular reassessment of needs - Adjust team as disease progresses

Cost Considerations: - Medicare covers medically necessary services - Therapy services often covered (with limitations) - Mental health services covered but may have copays - Home health covered if medically necessary and homebound - Adult day care not usually covered - Out-of-pocket for non-covered services

Part IV: Emotional and Caregiver Support

Caring for someone with dementia takes an emotional toll. Support for caregivers is essential—you can't pour from an empty cup.

16. Grief

Grief is the natural response to loss. In dementia care, grief is complex and ongoing.

Types of Loss in Dementia: - Loss of the person you knew - Loss of relationship and companionship - Loss of shared activities and interests - Loss of future plans and dreams - Loss of role (spouse, parent) - Loss of independence - Loss of identity (for person with dementia)

Stages of Grief (not linear): - Denial - Anger - Bargaining - Depression - Acceptance

Important: These stages aren't a checklist or timeline. Grief is messy, non-linear, individual.

Unique Aspects of Grief in Dementia:

Ambiguous Loss: - Person is physically present but psychologically absent - Neither fully here nor gone - Cannot achieve closure - Makes grieving confusing and complicated

Disenfranchised Grief: - Others may not recognize your grief ("But they're still alive") - Society may not validate your loss - May feel you shouldn't grieve while person is alive - Lack of social support for this type of grief

Chronic Sorrow: - Ongoing, periodic episodes of grief - Triggered by milestones, memories, progression - Cycles of grief throughout disease course - Normal response to prolonged loss

Anticipatory Grief (see next section)

Coping with Grief: - Acknowledge and accept your grief - Allow yourself to feel emotions - Talk about your feelings (therapist, support group, trusted friend) - Honor memories while accepting current reality - Practice self-care - Seek support - Remember: grief is love with nowhere to go

When to Seek Professional Help: - Grief interferes with daily functioning - Depression or anxiety - Suicidal thoughts - Unable to care for person with dementia - Prolonged, intense grief without improvement - Substance use to cope

Supporting Others' Grief: - Acknowledge their loss - Listen without trying to fix - Avoid platitudes ("At least they don't suffer") - Offer practical help - Remember special dates - Continue support over time

17. Anticipatory Grief

Anticipatory grief is grieving before death occurs, in anticipation of loss to come.

What Is Anticipatory Grief: - Mourning losses that have occurred and those yet to come - Grief for the future you won't have - Sadness about anticipated death - Common in dementia caregiving - Not just about death but ongoing losses

Why Anticipatory Grief Happens in Dementia: - Progressive disease with predictable decline - Time to anticipate future losses - Watching person disappear gradually - Awareness of trajectory toward death - Many small losses over time

Manifestations: - Sadness and crying - Anger or irritability - Anxiety about the future - Guilt (for feeling grief while person is alive) - Social withdrawal - Physical symptoms (fatigue, aches, insomnia) - Difficulty concentrating

Benefits of Anticipatory Grief: - Opportunity to prepare emotionally - Time to say things you want to say - Chance to resolve conflicts - Make end-of-life plans - Build support systems - Begin processing loss before death - Potentially easier bereavement after death

Challenges: - Exhaustion from prolonged grief - Others may not understand - Guilt about grieving while person is alive - May create distance from person ("protective distancing") - Emotional rollercoaster - No clear endpoint (until death)

Coping with Anticipatory Grief: - Acknowledge it's normal and valid - Balance living in moment with anticipating future - Talk about feelings - Join support group (others who understand) - Individual counseling - Self-care is essential - Focus on what you can control - Make meaning of the time remaining - Create memories - Say what needs to be said

Does Anticipatory Grief Make Death Easier?: - Research shows mixed results - May help in some ways (preparation, support in place) - Doesn't necessarily reduce grief after death - Post-death grief is still real and valid - Each person's experience is unique

Anticipatory Grief vs. Giving Up: - Grieving ≠ giving up - Can grieve and still provide excellent care - Can be sad about future while present in moment - Not incompatible with hope and love

18. Caregiver Burden

Caregiver burden is the physical, emotional, social, and financial strain experienced by caregivers.

What Is Caregiver Burden: - Multidimensional strain of caregiving - Physical exhaustion - Emotional overwhelm - Social isolation - Financial stress - Sense of being trapped - Impacts health and wellbeing

Statistics: - 60% of dementia caregivers rate emotional stress as high or very high - 40% suffer from depression - Caregivers have higher rates of chronic conditions - Caregivers have compromised immune systems - Higher mortality rate than non-caregivers

Factors Contributing to Burden: - Severity of dementia symptoms - Behavioral and psychological symptoms (BPSD) - Duration of caregiving - Lack of support - Relationship quality before illness - Caregiver's own health problems - Financial strain - Lack of knowledge about dementia - Unrealistic expectations - Lack of respite - Family conflict

Signs of Caregiver Burden:

Physical: - Fatigue and exhaustion - Sleep problems - Frequent illness - Weight loss or gain - Neglecting own health needs - Physical pain (headaches, back pain)

Emotional: - Depression or sadness - Anxiety and worry - Anger and irritability - Feeling overwhelmed - Crying frequently - Emotional numbness - Loss of interest in activities

Social: - Isolation from friends and family - Giving up hobbies and activities - Relationship strain - Feeling alone - No time for self

Mental: - Difficulty concentrating - Memory problems - Inability to make decisions - Feeling confused

Behavioral: - Impatience with care recipient - Using alcohol or medications to cope - Overreacting to minor irritations - Snapping at others

Reducing Caregiver Burden:

Ask for and Accept Help: - Family members - Friends - Professionals (home care) - Adult day care - Respite care

Take Breaks: - Respite care (regular breaks) - Short-term care in facility - In-home respite - Adult day care several days/week

Set Realistic Expectations: - You can't do everything - Care needs will exceed your capacity - It's okay to need help - Progress is not the goal—maintaining function is success

Care for Your Health: - Regular doctor visits - Exercise (even 10 minutes helps) - Healthy eating - Adequate sleep - Take medications as prescribed - Don't skip own medical appointments

Emotional Support: - Join support group - Individual counseling - Talk to friends - Online communities - Spiritual support

Education: - Learn about dementia - Attend caregiver training - Use resources (Alzheimer's Association) - Knowledge reduces stress

When to Consider Placement: - Your health is suffering - Cannot provide safe care - Behavior is dangerous - Person needs 24/7 supervision - Family conflict is severe - Placement is not failure—it's recognizing limits

Self-Compassion: - You're doing your best - It's okay to have negative feelings - It's okay to need a break - It's okay to consider placement - You are enough

19. Stress Management

Stress management involves strategies and techniques to cope with caregiving stress and reduce its impact.

Why Stress Management Is Essential: - Chronic stress harms physical and mental health - Stressed caregivers provide poorer care - Reduces quality of life - Increases risk of depression, anxiety, illness - Can lead to burnout - Model healthy coping for others

Signs You Need Stress Management: - Always feel rushed or overwhelmed - Frequent headaches or physical symptoms - Sleep problems - Irritability or anger - Withdrawal from activities you enjoyed - Appetite changes - Feeling hopeless - Anxiety or worry

Stress Management Techniques:

Relaxation Techniques: - Deep breathing (4-7-8 breathing: inhale 4, hold 7, exhale 8) - Progressive muscle relaxation - Meditation or mindfulness - Guided imagery - Yoga or tai chi - Listening to calming music

Physical Activity: - Walk (even 10 minutes) - Exercise class - Gardening - Dancing - Swimming - Any movement helps

Time Management: - Prioritize essential tasks - Let go of non-essentials - Use routines to reduce decisions - Batch tasks (do all errands one trip) - Say no to additional commitments - Ask others to help with tasks

Cognitive Strategies: - Challenge negative thoughts - Focus on what you can control - Practice gratitude (one thing each day) - Reframe situations - Accept imperfection - Let go of guilt

Social Connection: - Talk to friends - Join support group - Maintain relationships - Don't isolate - Ask for help - Accept offers of support

Self-Care (Non-Negotiable): - Regular sleep schedule - Healthy meals - Take medications - Attend own medical appointments - Do something you enjoy (read, hobby, TV show) - Small daily pleasures

Professional Support: - Individual therapy - Support group - Caregiver coach - Stress management class - Employee Assistance Program (if employed)

Quick Stress-Relief Strategies (in the moment): - 10 deep breaths - Step outside for 5 minutes - Call a friend - Listen to a favorite song - Splash cold water on face - Do 10 jumping jacks - Pet your dog or cat - Look at photos that make you smile

Building Resilience: - Maintain routines - Stay connected to others - Practice optimism when possible - Find meaning in caregiving - Accept change as part of life - Keep perspective - Laugh when you can

When Professional Help Needed: - Stress interferes with functioning - Using substances to cope - Thoughts of harming self or care recipient - Severe depression or anxiety - Physical health declining - Unable to manage on your own

20. Support Groups

Support groups bring together people facing similar challenges to share experiences, information, and emotional support.

What Are Support Groups: - Regular meetings (weekly, biweekly, monthly) - Facilitated by professional or peer - Caregivers share experiences and advice - Safe space to express feelings - Education and resources - In-person or online

Types of Support Groups:

General Dementia Caregiver: - All types of dementia - All stages - Open to all caregivers

Specific: - Early-stage support groups (person with dementia attends) - Specific dementia types (Alzheimer's, FTD, LBD) - Stage-specific (early, middle, late) - Relationship-specific (spouse, adult child) - Men's caregiver groups

Online: - ALZConnected (Alzheimer's Association) - Facebook groups - Dementia forums - Video conference groups - 24/7 accessibility

Telephone: - Conference call groups - Helplines (Alzheimer's Association 24/7 Helpline)

Benefits of Support Groups: - Reduce isolation - Validate your experiences - Learn practical strategies from others - Emotional support from people who understand - Information about resources - Normalize your feelings - Reduce stress and depression - Increase coping skills - Safe place to vent

What to Expect: - Introductions (first names, relationship to person with dementia) - Check-in (how's everyone doing) - Topic or open discussion - Sharing experiences (no requirement to share) - Facilitator keeps discussion on track - Confidentiality agreement - Usually 1-2 hours - Refreshments sometimes

Finding Support Groups: - Alzheimer's Association (alz.org): search by zip code - Area Agency on Aging - Local hospitals and senior centers - Faith communities - Online search - Doctor recommendations - Adult day care programs often offer caregiver support groups

Choosing a Support Group: - Try several to find right fit - Consider format (in-person vs. online) - Time of day that works - Facilitated vs. peer-led - Specific focus vs. general - Group size and dynamics - Don't give up after one meeting

When Support Groups Help Most: - Feeling isolated - Need practical advice - Emotional support - Learn from others' experiences - Feeling alone in journey - Throughout entire disease course

When Support Groups May Not Be Right: - Prefer one-on-one counseling - Group setting uncomfortable - Timing doesn't work - Hearing others' difficulties increases anxiety - Need more intensive mental health support - That's okay—find what works for you

Virtual Support Groups: - Access from home - Attend while person with dementia sleeps or in adult day care - No travel time - Access to broader range of groups - ALZConnected online community - Video support groups (Zoom) - May feel less personal but very convenient

Support Groups for Person with Dementia: - Early-stage support groups - Person with dementia attends (sometimes with caregiver, sometimes separate) - Share experiences with others facing diagnosis - Maintain identity beyond diagnosis - Reduce isolation - Often run concurrently with caregiver group

Part V: Care Options and Services

As dementia progresses, additional care and support services become necessary. Understanding options helps with planning and decision-making.

21. Home Care Services

Home care services provide professional care and assistance in the person's home.

Types of Home Care:

Home Health Care (Medical): - Skilled nursing care - Physical, occupational, speech therapy - Wound care, medication management - Short-term, following hospitalization or for specific medical need - Ordered by doctor - Usually covered by Medicare (if homebound and medically necessary)

Personal Care/Non-Medical Home Care: - Help with ADLs (bathing, dressing, toileting, eating, mobility) - Light housekeeping - Meal preparation - Medication reminders - Companionship - Transportation - Not covered by Medicare - Private pay or long-term care insurance

Levels of Care Providers:

Certified Nursing Assistant (CNA): - Training in basic care - Help with ADLs - Takes vital signs - Most common level for dementia care - \(20-\)30/hour typical

Home Health Aide (HHA): - Similar to CNA - May have home health-specific training - Works under nurse supervision - \(20-\)30/hour typical

Licensed Practical Nurse (LPN): - Medical training - Can give medications, shots - Wound care, medical equipment - \(30-\)45/hour typical

Registered Nurse (RN): - Advanced medical training - Assesses, plans care, provides skilled nursing - Manages complex medical needs - \(45-\)75/hour typical

Companion/Homemaker: - Non-medical support - Companionship, light housekeeping, meals - Cannot provide personal care - \(15-\)25/hour typical

When to Consider Home Care: - Person needs help with ADLs - Caregiver needs regular breaks - Safety concerns (supervision needed) - After hospitalization - Medical care needs - Caregiver works outside home - Alternative to facility placement

How to Find Home Care: - Home care agencies (vetted, insured, backup providers) - Independent caregivers (hire directly, less expensive, more risk) - Referrals from doctor, hospital, Eldercare Locator (1-800-677-1116) - Aging Life Care Association - Care.com, HomeAdvisor, local ads

Questions to Ask Home Care Agency: - Licensed and bonded? - Background checks on caregivers? - Dementia-specific training? - Availability and scheduling flexibility? - Minimum hours required? - How matched with caregiver? - Supervision and quality monitoring? - What if caregiver can't come? - Costs and payment options?

Hiring Independent Caregiver: Pros: Less expensive, more control, one-on-one relationship Cons: You're the employer (taxes, backup, training), no oversight, potential liability If hiring independently: Background check, references, written agreement, check insurance

Cost: - Varies by location and level of care - National average: \(25-\)35/hour for non-medical care - Usually 2-4 hour minimum per visit - Overnight care less per hour but longer shifts - Live-in care: \(200-\)350/day - Annual cost for 40 hours/week: \(50,000-\)70,000

Payment Options: - Private pay (most common) - Long-term care insurance - Veterans benefits (VA Aid and Attendance) - Medicaid home care programs (limited, varies by state) - Medicare only for skilled home health (not custodial care)

Making Home Care Work: - Start part-time and increase as needed - Same caregiver for consistency when possible - Clear communication about tasks and preferences - Written care plan - Respect caregiver as professional - Regular check-ins - Give feedback - Have backup plan

When Home Care Not Enough: - Need 24/7 supervision - Unsafe at home even with care - Behavioral issues caregivers can't manage - Cost approaching facility care - Isolation despite home care - Medical needs too complex

22. Adult Day Care

Adult day care provides daytime supervision, activities, and care in a community setting.

What Is Adult Day Care: - Drop off in morning, pick up in afternoon/evening - Group setting (usually 10-30 participants) - Activities, socialization, meals - Supervision in safe environment - Some programs dementia-specific - Typically operate weekdays, some have weekend hours

Types of Adult Day Programs:

Social Model: - Focus on activities and socialization - Meals, crafts, games, outings, exercise - Light supervision - For people with mild to moderate dementia - Most common and least expensive

Medical/Health Model: - Nursing staff on site - Can handle more complex medical needs - Medication management - Therapy services sometimes available - For people with dementia and medical conditions - More expensive

Specialized Dementia Care: - Staff trained in dementia care - Environment designed for dementia - Memory-focused activities - Behavior management - May be called "memory care day program"

Services Typically Provided: - Supervision and safety - Meals and snacks - Activities and socialization - Exercise programs - Transportation (sometimes) - Personal care assistance (bathing, toileting) - Medication administration - Health monitoring

Benefits of Adult Day Care: - Caregiver respite (regular break) - Socialization for person with dementia - Structure and routine - Professional supervision - Activities and stimulation - Reduces isolation - Delays nursing home placement - Caregiver can work - Much less expensive than in-home care

Who Benefits: - Mild to moderate dementia - Able to participate in group setting - Ambulatory or in wheelchair - Not aggressive or unsafe in groups - Caregiver needs regular daytime break

Hours and Schedules: - Typically full day (6-8 hours) or half day - 2-5 days per week most common - Start part-time and increase - Some programs flexible, others require set schedule

Cost: - National average: \(75-\)100 per full day - Half days less expensive - Some sliding scale based on income - Much less expensive than facility care or full-time home care

Payment: - Private pay - Long-term care insurance (some policies) - Medicaid (in some states for those who qualify) - Veterans benefits - Not covered by Medicare - Some programs have scholarships

Transportation: - Some programs provide - Additional cost or included in day rate - Family provides (many programs)

Finding Adult Day Care: - Eldercare Locator: 1-800-677-1116 - National Adult Day Services Association: nadsa.org - Area Agency on Aging - Alzheimer's Association local chapter - Referrals from doctor or social worker

Visiting Programs: - Tour during operating hours - Observe activities and staff interactions - Ask to attend for trial day - Talk to other families - Check licensing and inspections

Questions to Ask: - Dementia-specific programming? - Staff-to-participant ratio? - Staff training in dementia care? - Activities offered? - How are challenging behaviors handled? - Transportation available? - Medication administration? - Meal quality and special diets? - Days and hours of operation? - Costs and payment options?

Helping Adjustment: - Start slowly (1-2 days per week) - Same days each week for routine - Bring familiar item from home - Don't linger at drop-off - Staff experienced in transition - May take several weeks to adjust - Don't give up after first few attempts

Common Concerns: - "They won't want to go": Most resist at first, then enjoy once there - "They'll be upset": Staff trained in redirection and engagement - "They won't fit in": Programs designed for people with cognitive impairment - "I feel guilty": Taking care of yourself helps you provide better care

23. Assisted Living

Assisted living facilities provide housing, personal care, and services for people who need help with daily activities but don't need nursing home care.

What Is Assisted Living: - Residential facility - Private or shared apartment/room - Meals provided - Help with ADLs - Medication management - Activities and socialization - Housekeeping and laundry - 24/7 staff available - More independent than nursing home

Who Is Assisted Living For: - Need help with some ADLs (bathing, dressing, medication) - Cannot live alone safely - Mobile (can walk independently or with assistive device) - Minimal medical needs - Can participate in community life - Early to moderate dementia

Not Appropriate When: - Needs 24/7 skilled nursing care - Requires two-person transfers - Advanced dementia with wandering/behavioral issues - Significant medical needs - Bedbound

Services Typically Provided: - Three meals daily - Assistance with ADLs (bathing, dressing, grooming, toileting) - Medication management - Housekeeping and laundry - Activities and outings - Transportation - Emergency call system - Wellness checks - Coordination with healthcare providers

Assisted Living vs. Memory Care: - Assisted living: General population, minimal dementia support - Memory Care: Specialized dementia unit (see next section) - Many assisted living facilities have separate memory care units

Types of Apartments: - Studio (one room) - One bedroom - Two bedroom (for couples) - Shared rooms (roommate, less expensive)

Cost: - National median: \(4,500-\)6,000/month - Varies greatly by location and level of care - Private room more expensive than shared - Additional fees for extra services - Extra care fees increase with dementia progression

Payment: - Private pay most common - Long-term care insurance - Veterans benefits - Medicaid (limited, some states, some facilities) - Not covered by Medicare

Finding Assisted Living: - Eldercare Locator: 1-800-677-1116 - A Place for Mom (referral service, free to families) - Caring.com - Area Agency on Aging - Tour multiple facilities

What to Look For: - Clean, well-maintained, homelike - Friendly, engaged staff - Residents look content and engaged - Activities happening during visit - Good food (ask to sample a meal) - Appropriate staffing levels - Safe environment - Staff trained in dementia care

Questions to Ask: - What's included in base rate vs. additional costs? - Staff-to-resident ratio? - Dementia-specific training for staff? - How are care needs assessed and reviewed? - Can stay if dementia progresses? - Medication management procedures? - What happens in medical emergency? - Can keep own doctor? - Move-in/move-out terms? - Licensing and inspection reports?

Making the Transition: - Involve person in decision-making if possible - Transition is difficult (expect adjustment period) - Bring familiar items from home - Visit frequently initially - Communicate with staff - Adjustment typically takes 4-6 weeks - Staff experienced with transitions

When to Move to Higher Level: - Wandering out of facility - Aggressive behaviors - Repeated falls - Needs skilled nursing care - Facility requests transfer - May move to memory care or nursing home

24. Memory Care Units

Memory care units are specialized facilities designed specifically for people with Alzheimer's disease and other dementias.

What Is Memory Care: - Secure, specialized dementia care setting - Can be standalone or part of assisted living/nursing home - Secured environment (cannot wander out) - Staff trained in dementia care - Dementia-specific programming - Typically small units (12-24 residents) - Homelike environment with safety features - 24/7 supervision

Who Is Memory Care For: - Moderate to advanced dementia - Wandering or elopement risk - Behavioral symptoms - Needs structured routine and supervision - Cannot safely stay in regular assisted living - Not safe at home even with care - Still mobile and able to participate in activities

Design Features: - Secured entrances/exits - Circular or clear pathways (no dead ends) - Visual cues and signage - Controlled lighting (reduces sundowning) - Reduced stimulation (less noise, calm colors) - Memory boxes at room doors - Outdoor walking areas (secured) - Homelike environment (not institutional)

Staffing: - Higher staff-to-resident ratios than assisted living - Specialized dementia training (required) - Trained in redirection, validation, de-escalation - Consistent staff for familiar faces - Usually awake staff 24/7 - Activities staff

Programming: - Structured daily routine - Dementia-appropriate activities - Meaningful engagement - Music therapy - Reminiscence activities - Sensory activities - Exercise programs - Life story approach

Memory Care vs. Assisted Living: - Memory care: Secured, specialized for dementia - Assisted living: Open, general population - Memory care: Higher staffing levels - Memory care: More expensive - Some assisted living has "memory care neighborhoods"

Memory Care vs. Nursing Home: - Memory care: For mobile residents with dementia - Nursing home: For medical needs, bedbound, advanced care - Memory care: Homelike, smaller units - Nursing home: More medical, larger - Many move from memory care to nursing home in late stage

Cost: - National median: \(6,000-\)8,500/month - More expensive than regular assisted living - Costs increase with level of care - Private room more than shared - Additional fees for higher care needs

Payment: - Private pay - Long-term care insurance - Veterans benefits - Medicaid (some facilities, some states, waiting lists) - Not covered by Medicare

Finding Memory Care: - Alzheimer's Association local chapter - A Place for Mom - Eldercare Locator - Tour multiple facilities - Talk to other families

What to Look For: - Dementia-specific training certifications - Staff interactions with residents (respectful, patient, kind) - Residents appear content, engaged - Activities observed during visit - Secure but not prison-like - Adequate staffing - Clean, well-maintained, homelike - Outdoor space - Quality of food - Appropriate for stage of dementia

Questions to Ask: - Staff training in dementia care? - Staff-to-resident ratio (day and night)? - Secure environment protocols? - How are behaviors managed? - Activities and programming? - Can resident stay as disease progresses? - At what point would transfer to nursing home be needed? - How is medical care coordinated? - Visiting policies? - All-inclusive cost or additional fees?

Transition Considerations: - Difficult decision for families - Person may resist or be confused - Guilt is common but placement may be necessary - Your relationship can improve (focus on quality time, not care tasks) - Visit regularly but don't feel obligated to be there daily - Trust staff but advocate for needs - Adjustment period normal

When Memory Care Is Needed: - Wandering out of home or facility - Unsafe at home or in assisted living - Behavioral symptoms difficult to manage - Need 24/7 supervision - Caregiver burnout - Safety risks too high - Family cannot provide necessary care level

25. Nursing Homes

Nursing homes (also called skilled nursing facilities) provide 24-hour medical care and supervision for people with significant health needs.

What Is a Nursing Home: - Medical facility providing 24/7 skilled nursing care - For people with significant medical needs - Long-term or short-term stays - Nursing staff onsite always - Doctors oversee care - Therapy services available - Highly regulated - More medical and less homelike than memory care

Who Is Nursing Home For: - Complex medical needs requiring skilled nursing - Late-stage dementia - Bedbound or very limited mobility - Requires two-person transfers - Needs feeding assistance - Advanced swallowing issues - Needs wound care, IV medications, or other skilled services - Cannot be safely cared for in memory care or home

Services Provided: - 24/7 skilled nursing care - Medical care and monitoring - Medication management - Physical, occupational, speech therapy - Assistance with all ADLs - Meals (including specialized diets, pureed, thickened liquids) - Social services - Activities - Housekeeping and laundry

Nursing Home Dementia Units: - Some nursing homes have specialized dementia units - Secured environment - Dementia-specific programming - Staff trained in dementia care - Higher staffing ratios - Within larger nursing home

Levels of Care: - Skilled Nursing: Highest level, complex medical needs - Intermediate Care: Less intensive medical care - Custodial Care: Personal care, ADL assistance - Dementia residents often need custodial care in late stage

Staffing: - Registered Nurses (RNs) - Licensed Practical Nurses (LPNs) - Certified Nursing Assistants (CNAs) - provide most direct care - Doctor visits regularly - Social worker - Activities director - Dietitian - Therapists (PT, OT, ST)

Short-Term vs. Long-Term: - Short-term: Rehabilitation after hospitalization (Medicare-covered, time-limited) - Long-term: Permanent residence (private pay or Medicaid) - Most dementia residents are long-term

Cost: - National median: \(8,000-\)10,000/month for private room - Semi-private room less expensive - Significantly more expensive than assisted living or memory care - Can quickly deplete assets

Payment: - Medicaid: Covers long-term nursing home care (must qualify financially) - Medicare: Only short-term rehabilitation (up to 100 days with conditions) - Long-term care insurance - Veterans benefits - Private pay: Until assets depleted, then Medicaid

Finding Quality Nursing Home: - Medicare's Nursing Home Compare: medicare.gov/care-compare - State inspection reports - Visit multiple facilities - Visit multiple times (different days/times) - Talk to residents and families

Quality Indicators: - 5-star rating (on Medicare site) - Staffing levels (CNAs especially) - Clean, well-maintained - Residents appear clean and well-cared-for - No unpleasant odors - Staff interactions respectful and kind - Activities happening - Low staff turnover - Few state violations

Questions to Ask: - Staff-to-resident ratios? - RN on site 24/7? - Staff turnover rate? - Dementia-specific training? - Inspection reports and ratings? - Medicaid-accepted? Waiting list? - Room availability? - How are behaviors managed? - Family involvement encouraged? - Visiting policies? - Can bring own furnishings?

Making the Decision: - Often made during crisis (hospitalization, fall, caregiver collapse) - Difficult and emotional decision - Guilt is common - Placement may be necessary for safety and medical needs - You're not abandoning them—ensuring they get necessary care

Transition: - Bring familiar items - Photos on walls - Visit regularly - Communicate with staff - Be advocate - Adjustment period - Focus on what they can enjoy

Staying Involved: - Visit regularly but not obligation to be there daily - Participate in care planning - Advocate for needs - Build relationships with staff - Bring favorite foods, music - Celebrate holidays and birthdays - Your presence matters

When to Consider Nursing Home: - Medical needs exceed what memory care/home care can provide - Late-stage dementia - Bedbound - Significant swallowing issues - Requires skilled nursing (wounds, IV meds, etc.) - Hospice care in facility

Hospice in Nursing Home: - Can receive hospice care in nursing home - Medicare covers hospice - Extra layer of comfort-focused care - End-of-life support

Part VI: Community Resources

Numerous organizations and resources exist to support families affected by dementia.

26. Alzheimer's Association

The Alzheimer's Association is the leading voluntary health organization in Alzheimer's care, support, and research.

What the Alzheimer's Association Provides:

24/7 Helpline: 1-800-272-3900 - Trained specialists - Information and referrals - Crisis assistance - Support in over 200 languages - Available every day, any time

Education Programs: - Dementia basics - Caregiver training - Communication strategies - Understanding behaviors - Legal and financial planning - Free virtual and in-person

Support Groups: - In-person and online - Caregiver support groups - Early-stage support groups - Specific populations (men, adult children, spouses) - ALZConnected online community

Local Resources: - Find local services - Referrals to care providers - Community programs - Chapter-specific services - Care consultation

Educational Materials: - Free publications and fact sheets - Videos - Podcasts - Website resources (alz.org) - Downloadable materials in multiple languages

Awareness and Advocacy: - Raise public awareness - Advocate for research funding - Support policy changes - The Longest Day fundraiser - Walk to End Alzheimer's

Research Funding: - Largest nonprofit funder of Alzheimer's research - Clinical trials matching service (TrialMatch) - Advancing research toward prevention and cure

Services by Local Chapter: - Vary by location - Support groups - Education programs - Care consultation - Respite grants (some chapters) - Medical equipment lending - Safe Return program - Early-stage programs

How to Connect: - Website: alz.org - 24/7 Helpline: 1-800-272-3900 - Find local chapter by zip code - Email: info@alz.org - All services free

Key Programs:

MedicAlert + Safe Return: - 24/7 nationwide emergency response service - ID jewelry - For people who wander

ALZConnected: - Online community - Message boards - Share experiences - Connect with others

TrialMatch: - Clinical trial matching service - Free and confidential - Connects volunteers with research studies

Why Use Alzheimer's Association: - Evidence-based information - Trustworthy resource - Free services - Comprehensive support - Navigate dementia journey

27. Area Agency on Aging (AAA)

Area Agencies on Aging are local organizations that provide information, services, and support for older adults and caregivers.

What AAA Provides: - Information and referral services - Care coordination - Caregiver support programs - Nutrition programs (Meals on Wheels) - Transportation services - Home modification assistance - Benefits counseling - Elder abuse prevention - Long-term care ombudsman - Health insurance counseling (SHIP)

Services for Dementia Caregivers:

Respite Care: - Short-term relief for caregivers - In-home or out-of-home - May have funding assistance for low-income

Caregiver Support Programs: - Support groups - Education and training - Caregiver resource centers - Individual counseling - Stress management

National Family Caregiver Support Program: - Federal program administered through AAA - Information and referral - Assistance accessing services - Caregiver training - Respite care - Supplemental services - Limited funding, varies by location

Other Services: - Home-delivered meals (Meals on Wheels) - Transportation to medical appointments - Benefits counseling (Medicare, Medicaid, Social Security) - Home modifications - Legal assistance - Evidence-based programs

How to Find Your Local AAA: - Eldercare Locator: 1-800-677-1116 or eldercare.acl.gov - Search by zip code - Every community has one - May be called different names (Council on Aging, Senior Services)

What to Expect: - Initial assessment of needs - Information about local services - Referrals to appropriate resources - May coordinate services - Free or sliding-scale fees

AAA Serves: - People 60 and older - Family caregivers - Grandparents raising grandchildren - Some services available regardless of income

Why Use AAA: - Local expertise - Connects to community resources - Navigate services - Some funding for services - One-stop information source

Long-Term Care Ombudsman: - AAA houses ombudsman program - Advocates for residents in nursing homes and assisted living - Investigate complaints - Resolve problems - Educate about rights - Free and confidential

SHIP (State Health Insurance Assistance Program): - Medicare counseling - Help understanding benefits - Compare plans - Enrollment assistance - Free and unbiased

28. GPS Tracking Devices

GPS tracking devices help locate people with dementia who wander or get lost.

Why GPS Tracking Matters: - 60% of people with dementia will wander - Can become lost in familiar places - Time is critical (risk of injury, death increases after 24 hours) - Peace of mind for caregivers - Enables more independence while maintaining safety

Types of GPS Devices:

Wearable Devices: - Smartwatches: Apple Watch, Samsung Galaxy Watch - GPS watches: Dedicated tracking watches for seniors - Ankle or wrist GPS bracelets: Tamper-resistant - GPS shoes: Tracking device built into shoe (GPS SmartSole) - Pendant: Worn on necklace or lanyard

Tracking Accessories: - Wallet card with GPS - Belt with GPS - Keychain GPS - Clip-on devices

Two-Way Communication Devices: - Allow calling between device and phone - GPS + voice communication - Useful for check-ins

Features to Look For: - Real-time tracking: See location on phone/computer anytime - Geofencing: Alerts when person leaves designated safe zone - Long battery life: At least 24 hours - Waterproof: Can wear in shower - Comfortable and discreet: More likely to be worn - Tamper-resistant: Cannot easily remove (for some devices) - Two-way communication: Some models allow calling - SOS button: Emergency alert button

Popular GPS Tracking Products:

AngelSense: - GPS tracker with voice monitoring - Worn on clothing or belt - Designed for special needs and dementia - \(40-\)60/month subscription

Lively Mobile: - Smartwatch with GPS - Medical alert features - Two-way communication - $50+/month

Jiobit: - Small clip-on device - Long battery life - Geofencing - \(9-\)15/month

Apple AirTag: - Inexpensive ($29) - Uses Apple's Find My network - Can put in wallet, attach to keys, sew into clothing - No subscription fee - Requires iPhone - Not real-time GPS (uses Bluetooth from nearby Apple devices)

GPS SmartSole: - GPS device in shoe insole - Can't remove or forget - $300+ plus subscription

Considerations: - Most require monthly subscription (\(10-\)60/month) - Requires charging (daily or weekly) - Cell service needed - Person may remove device - False alarms possible - Battery can die

Limitations: - Doesn't prevent wandering - Accuracy varies (10-100 feet typical) - Only helps if device is charged and worn - Person may not know how to respond if you call device - Indoor location may be less accurate

Best Practices: - Choose device person won't easily remove - Charge daily (build into routine) - Test regularly - Set up geofence around home - Have recent photo readily available - Register with Project Lifesaver or MedicAlert + Safe Return as backup - Inform neighbors about wandering risk

Cost: - Devices: \(30-\)400 - Monthly subscriptions: \(10-\)60 - Most require subscription for tracking service

Not Covered by Insurance: - Out-of-pocket expense - May be worth it for peace of mind

Other Tracking Options: - Project Lifesaver (radio frequency bracelet) - MedicAlert + Safe Return (ID and response service) - Local police registry for at-risk individuals

29. Medication Reminders

Medication reminder systems help ensure medications are taken correctly and on time.

Why Medication Reminders Are Important: - Forgetting doses common in dementia - Taking wrong dose dangerous - Taking medication twice because forgot first dose - Missing doses reduces medication effectiveness - Improves medication adherence - Reduces caregiver worry

Types of Medication Reminders:

Low-Tech Options:

Pill Organizers: - Weekly organizer with daily compartments - 7-day with 4 times per day most common - Large compartments easier to use - See at a glance if dose taken - \(5-\)20

Alarm Watches: - Set alarms for medication times - Vibrating alarms available - Simple reminder but doesn't prevent errors - \(15-\)50

Phone/Tablet Alarms: - Set multiple daily alarms - Label each alarm ("Take morning pills") - Free if already have device

Medication Lists Posted: - List on refrigerator or bathroom mirror - When to take each medication - Relies on person checking list - Free

High-Tech Options:

Medication Reminder Apps: - Set reminders on smartphone - Track when taken - Send caregiver alerts if missed - Examples: Medisafe, CareZone, Mango Health, MyTherapy - Free or low cost

Automatic Pill Dispensers:

Hero: - Stores and dispenses pills automatically - Alarms when dose ready - Locks remaining pills - Caregiver app alerts if dose missed - Pharmacist loads dispenser - \(30-\)60/month

MedMinder: - Automated dispenser with alarms - Locks pills - Cellular alerts to caregiver - \(40-\)70/month

TabSafe: - Automated medication dispenser - Reminds and locks - Phone alerts - £40-£60/month (UK-based)

LiveFine: - Automatic dispenser - Voice reminders - Caregiver alerts - $35/month

Pria (GlowCap): - Smart pill bottle cap - Lights up and sounds at medication time - Tracks when opened - Sends alerts - $20+/month

Features to Consider: - Alarm volume and type (sound, light, vibration) - Locking mechanism (prevents taking extra doses) - Multiple daily dose times - Large capacity (for multiple medications) - Easy to refill - Battery backup - Caregiver notifications - Subscription costs

When Different Options Work:

Early Stage: - Simple pill organizer may be sufficient - Alarms as reminders - Person can manage with minimal help

Middle Stage: - Pill organizer filled by caregiver - Caregiver supervises taking - Apps or automatic dispensers helpful

Late Stage: - Caregiver administers all medications directly - Locks medications away - Reminder system not necessary - Supervision required

Limitations: - Technology requires setup and maintenance - Subscription costs - Person must respond to reminder - Cannot force person to take medication - May confuse or frustrate - Not foolproof

Caregiver Involvement: - Even with technology, caregiver monitoring needed - Fill pill organizers weekly - Check that doses were taken - Respond to alerts - Troubleshoot technology

Cost: - Low-tech: \(0-\)50 one-time - Apps: Free to $10/month - Automatic dispensers: \(30-\)70/month plus device cost - Not covered by Medicare/insurance - May be worth it to prevent medication errors

Choosing the Right System: - Assess person's abilities - Consider technology comfort - Budget - Number of medications - Caregiver availability - Start simple and add technology if needed

30. Telehealth

Telehealth (also called telemedicine) is healthcare provided remotely via video, phone, or digital communication.

What Is Telehealth: - Video visits with doctors - Phone consultations - Remote monitoring - Online patient portals - Store-and-forward (send info to doctor, get feedback later) - Mobile health apps

Types of Telehealth Visits:

Video Visits: - Live video call with doctor - See and talk to each other - Most common telehealth - Similar to in-office visit

Phone Consultations: - Audio only - No video - May be option when video not possible

Remote Patient Monitoring: - Devices send data to doctor - Blood pressure monitors, glucose meters, weight scales - Doctor reviews remotely

E-Visits: - Online questionnaire - Doctor reviews and responds - For non-urgent issues

What Can Be Done via Telehealth: - Routine follow-ups - Medication management - Cognitive assessments - Mental health counseling - Specialist consultations - Post-hospitalization check-ins - Prescription refills - Review of test results - Caregiver consultation

What Cannot Be Done: - Physical examination requiring touch - Procedures - Lab work (must go to lab) - Complex diagnostics - Emergency care

Benefits for Dementia Care: - Reduces transportation burden - Less disruptive to person with dementia - Reduces anxiety of clinic visits - More frequent monitoring possible - Specialist access (even if far away) - Caregiver can participate easily - Safer during illness outbreaks - Reduces exposure to infections

Challenges: - Technology required (smartphone, tablet, computer with camera) - Internet connection needed - Person with dementia may not understand virtual visit - Harder to assess non-verbal cues - Technology difficulties - Limited physical examination - May not feel as personal

Medicare Coverage: - Medicare covers many telehealth services - Expanded during COVID-19 pandemic - Some restrictions on types of visits - Check current coverage rules - Private insurance varies

How to Prepare for Telehealth Visit:

Technology: - Test video and audio before appointment - Charge device - Good lighting in room - Quiet location - Stable internet connection

Before Visit: - Have list of medications - List of questions - Medical records if needed - Blood pressure/temperature if relevant - Caregiver present to assist

During Visit: - Speak clearly - Position camera so doctor can see person - Take notes - Ask for clarification - Request written instructions be sent

Telehealth Platforms: - Doxy.me - Zoom for Healthcare - Microsoft Teams - Health system-specific platforms - Simple to use (click link sent by doctor's office)

Specialist Telec onsultations: - Neurology - Psychiatry - Geriatrics - Can access specialists not available locally

Mental Health Telehealth: - Therapy and counseling - Psychiatric medication management - Support groups online - Very effective via telehealth

When In-Person Visit Better: - Initial diagnosis - Significant change in condition - New concerning symptoms - Physical exam needed - Preference for in-person - Technology barriers

Future of Telehealth in Dementia Care: - Increasing acceptance and use - Remote cognitive monitoring - Virtual support groups - Caregiver training online - Earlier intervention possible with remote monitoring

Conclusion: Navigating the Journey

A dementia diagnosis brings many challenges, but you are not alone. The legal, financial, healthcare, emotional, and community resources described in this chapter exist to support you through this journey.

Key Messages:

1. Plan Early: Legal and financial planning is most effective when done early, while the person can participate.

2. Use Available Resources: Don't try to do everything alone. Alzheimer's Association, Area Agency on Aging, support groups, and professional services are there to help.

3. Build Your Team: Coordinate with healthcare providers, use home care services, consider day care, and eventually facility care as needed.

4. Care for the Caregiver: Your health and wellbeing matter. Use respite, join support groups, manage stress, and ask for help.

5. Financial Planning Is Essential: Understand Medicare and Medicaid, consider long-term care insurance, and work with elder law attorney for complex situations.

6. Technology Can Help: GPS tracking, medication reminders, and telehealth can improve safety and care.

7. Placement Isn't Failure: Memory care and nursing homes provide necessary care when needs exceed what can be provided at home.

8. Grieve and Seek Support: Grief throughout the dementia journey is normal. Support groups and counseling help.

9. Advocate: Be the advocate for your loved one in healthcare, legal, and care settings.

10. Take It One Day at a Time: You don't need to have all the answers now. Resources and support are available as needs evolve.

Key Takeaways

1. Establish legal documents early (POA, healthcare proxy, advance directives) while person has capacity.

2. Guardianship and conservatorship are last resorts when planning wasn't done early or agents unavailable.

3. Financial planning is crucial—understand Medicare, Medicaid, and long-term care insurance options.

4. Medicaid planning requires expertise—work with elder law attorney at least 5 years before needing nursing home care.

5. Build a healthcare team including PCP, neurologist/geriatrician, and specialists as needed.

6. Care coordination is essential to ensure all providers communicate and care is comprehensive.

7. Grief and caregiver burden are normal—seek support through groups, counseling, and respite.

8. Support groups provide validation and practical advice from others who truly understand.

9. Home care services allow staying home longer while providing professional assistance and caregiver relief.

10. Adult day care is cost-effective and provides socialization, activities, and regular caregiver respite.

11. Assisted living provides community with personal care for those who need some assistance.

12. Memory care offers specialized dementia care in secured, homelike environment with trained staff.

13. Nursing homes provide skilled medical care for complex needs and late-stage dementia.

14. Alzheimer's Association and Area Agency on Aging are key resources for information, support, and services.

15. Technology aids like GPS tracking, medication reminders, and telehealth can improve safety and care management.

Review Questions

1. What are the differences between a Power of Attorney, Healthcare Proxy, and Living Will?

2. Why is it important to establish legal documents early in the dementia journey?

3. What is the difference between guardianship and conservatorship?

4. What does Medicare cover and not cover regarding dementia care?

5. What is the Medicaid look-back period and why does it matter for long-term care planning?

6. What are the roles of a primary care physician, neurologist, and geriatrician in dementia care?

7. What is anticipatory grief and how does it differ from grief after death?

8. What are five signs of caregiver burden?

9. What services does adult day care typically provide?

10. How does memory care differ from assisted living and nursing homes?

11. What resources does the Alzheimer's Association provide?

12. What features should you look for in a GPS tracking device for someone who wanders?

Additional Resources

Books

• "The 36-Hour Day" by Nancy L. Mace and Peter V. Rabins - Comprehensive caregiving guide, considered the bible of dementia caregiving

• "Elder Law Answer Book" by various authors - Legal planning for aging and incapacity

• "How to Care for Aging Parents" by Virginia Morris - Practical guide to caregiving and resources

Online Resources

• Alzheimer's Association - alz.org, 24/7 Helpline: 1-800-272-3900

• Eldercare Locator - eldercare.acl.gov, 1-800-677-1116 - Find local services

• Medicare.gov - Official Medicare site, Nursing Home Compare, Plan Finder

• National Institute on Aging - Alzheimer's and dementia resources

• Family Caregiver Alliance - Caregiver resources and support

• AARP Caregiving Resource Center - Practical caregiving information

Legal and Financial

• National Academy of Elder Law Attorneys (NAELA) - naela.org - Find elder law attorney

• National Association of Professional Geriatric Care Managers - aginglifecare.org

• Consumer Financial Protection Bureau - Managing Someone Else's Money - consumerfinance.gov

Support Organizations

• Lewy Body Dementia Association - lbda.org

• Association for Frontotemporal Degeneration - theaftd.org

• Alzheimer's Foundation of America - alzfdn.org

• UsAgainstAlzheimer's - usagainstalzheimers.org

Care Facility Search

• A Place for Mom - aplaceformom.com - Free facility referral service

• Caring.com - caring.com - Senior care resources and reviews

• Medicare Nursing Home Compare - medicare.gov/care-compare

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Congratulations! You've completed this comprehensive textbook on understanding dementia and providing compassionate, informed care. Use these resources and the knowledge you've gained to navigate the dementia journey with confidence, compassion, and support.

Related Chapters: - Chapter 7: Managing Challenging Behaviors - Behavioral management strategies - Chapter 12: Daily Living and Caregiving Skills - Practical caregiving skills - Chapter 14: Safety and Home Modifications - Creating safe environments