01
Medication Companion Guide
Managing medications for someone with dementia is one of the most consequential , and stressful , parts of caregiving. This guide helps you track what's being prescribed, what to watch for, and how to make the most of every doctor visit.
Anxiety & Agitation
Common medications include lorazepam, buspirone, SSRIs (sertraline, escitalopram), and low-dose antipsychotics. Non-pharmacological approaches , routine, music therapy, reduced stimulation , should always be tried first.
Watch For , Anxiety Medications
Increased confusion or sedation · Falls or balance changes · Paradoxical agitation (medication making symptoms worse) · Withdrawal symptoms if stopped suddenly · Changes in appetite or sleep patterns
Doctor Visit Question Builder , Anxiety
Questions to Ask Your Doctor
- Is this medication the least sedating option available?
- How long before we'll know if it's working?
- What are the specific warning signs we should call about immediately?
- Can this interact with their other medications? (Bring the full medication list.)
- What non-medication strategies should we be trying alongside this?
- At what point do we consider stopping or changing this medication?
Anxiety & Agitation , Weekly Symptom Tracker
| Date | Medication / Dose | Episode Description | Severity (1–10) | Duration | Trigger (if known) |
|---|---|---|---|---|---|
Hallucinations & Delusions
Visual hallucinations are most common in Lewy body dementia; persecutory delusions (believing items are stolen, believing a caregiver is an impostor) are common across all types. Antipsychotics carry serious risks in dementia , use with medical guidance only.
Important Safety Note
Atypical antipsychotics (quetiapine, risperidone, olanzapine) carry an FDA black box warning for increased mortality in older adults with dementia. Ask your doctor to document the risk-benefit discussion before starting any antipsychotic.
Questions to Ask Your Doctor , Hallucinations
- Is the hallucination distressing to them, or just distressing to me? (This changes the treatment calculus.)
- Could a urinary tract infection, medication interaction, or pain be causing this? Have we ruled those out?
- What is the specific mortality risk for this medication in someone their age and condition?
- If we start this medication, what does the monitoring plan look like?
- What are the de-escalation techniques we should use before medicating?
Hallucination Log
| Date / Time | What They Said / Saw | Distressed? (Y/N) | Duration | What Helped |
|---|---|---|---|---|
Sleep Disturbances
Sleep disruption affects up to 80% of people with dementia. Sundowning (increased confusion and agitation late in the day) is extremely common. Melatonin, trazodone, and improved sleep hygiene are first-line approaches; benzodiazepines and sleep aids like zolpidem are strongly discouraged.
Questions to Ask Your Doctor , Sleep
- Could daytime sleeping be contributing? What's the recommended cap on daytime naps?
- Is melatonin appropriate? What dose and timing do you recommend?
- Are any of their current medications affecting sleep? (Some dementia drugs worsen sleep.)
- Should we try light therapy? What protocol?
- At what point does nighttime wandering become a safety issue requiring structural changes to the home?
Sleep Pattern Tracker , Two-Week Log
| Date | Bedtime | Wake-ups (how many) | Rise time | Nap time | Sundowning? (Y/N) | Notes |
|---|---|---|---|---|---|---|
Master Medication List
Bring this to every appointment. Include supplements, vitamins, and over-the-counter items.
| Medication Name | Dose | Frequency | Prescribing Doctor | Purpose | Start Date | Notes |
|---|---|---|---|---|---|---|
02
Long-Term Care Progression
Dementia progresses differently for every person , the pace is unpredictable, the stages can overlap, and setbacks don't always mean the disease has advanced. What this section gives you is a map: not a timeline, but a way to recognize where you are, what's coming, and when to ask for more help.
How to Use This Section
Don't try to locate your loved one in a single stage. Look at the cluster of capabilities and needs , most people straddle two stages. The goal isn't to predict what's coming; it's to help you prepare without being blindsided.
The Stages , What to Expect
Early
Mild Impairment , Mostly Independent
Forgets recent events, names, or conversations. May repeat questions. Gets confused in unfamiliar environments. Can still live independently with support, manage most ADLs, and participate in meaningful activities. Key caregiver task: Legal and financial planning , this is the window. Power of attorney, healthcare proxy, advance directives, and asset inventory must happen now while they can express their wishes.
Mid
Moderate Impairment , Increasing Assistance Needed
Increasing confusion about time, place, and people. Difficulty with complex tasks (finances, cooking). Behavioral changes: wandering, sundowning, agitation. Needs help with bathing, dressing, and medications. Key caregiver task: Home safety modifications (door alarms, stove locks, grab bars), evaluate whether outside help (home aide, adult day program) is sustainable and appropriate.
Mid-Late
Moderate-Severe , Significant Care Required
May not recognize close family members. Limited verbal communication; may communicate through behavior. Requires assistance with all basic activities (bathing, dressing, toileting, eating). Falls risk significantly elevated. Key caregiver task: Assess whether home caregiving is sustainable. Begin researching memory care facilities even if you're not ready , waitlists can be 6–18 months long.
Late
Severe Impairment , Full Dependence
Limited or no verbal communication. Bed-bound or very limited mobility. Needs total care for all physical needs. At high risk for infections (pneumonia, UTIs), swallowing difficulties, and skin breakdown (pressure sores). Key caregiver task: Begin hospice conversations with the medical team. Hospice is not giving up , it is transitioning to expert comfort-focused care that most families say they wished they'd started earlier.
When to Escalate , Red Flags Checklist
Call the Doctor Today If You See:
- Sudden, rapid change in behavior or cognition (UTI is the most common hidden cause)
- Fever above 101°F or chills , infection risk is high
- Signs of a fall injury: limping, unusual pain, reluctance to bear weight
- Refusal to eat or drink for more than 24 hours
- Severe agitation that cannot be calmed by familiar routines or environment
- Breathing changes, chest pain, or significant swelling
- Unexplained new incontinence (sudden, not gradual)
- Significant weight loss (5+ pounds in a month without explanation)
Care Level Assessment , Where Are We?
| Activity of Daily Living | Independent | Needs Reminders | Needs Hands-on Help | Fully Dependent |
|---|---|---|---|---|
| Bathing | ||||
| Dressing | ||||
| Grooming | ||||
| Toileting | ||||
| Eating / Feeding | ||||
| Mobility / Transfer | ||||
| Medication Management | ||||
| Meal Preparation | ||||
| Financial Management | ||||
| Communication / Phone Use |
03
Advanced Care Strategies
Palliative care, hospice, and end-of-life decisions are the conversations most families avoid until they're in crisis. Having them early , before they're urgent , is one of the most loving things you can do.
Understanding Palliative Care vs. Hospice
Palliative Care
Specialized medical care focused on relief from pain, symptoms, and stress , at any stage of illness, alongside curative treatment. A palliative care team works with your existing doctors. Can start at diagnosis
Hospice Care
End-of-life care that shifts focus entirely to comfort when curative treatment is no longer sought. Typically eligible when a doctor certifies life expectancy of 6 months or less. Covered by Medicare Part A. Comfort-focused
The Most Common Regret
Families who use hospice consistently report they wish they'd started sooner. Hospice provides nursing visits, medication support, chaplain services, and respite care , resources that can significantly reduce caregiver burden in the final months.
Palliative Care Readiness Checklist
- Ask your primary care doctor or neurologist for a palliative care referral , don't wait for them to suggest it
- Discuss goals of care: What matters most? Comfort at home? Avoiding hospitalization? Spending time with family?
- Review advance directive and make sure it reflects current wishes
- Discuss POLST/MOLST form (Physician/Medical Orders for Life-Sustaining Treatment) with the medical team
- Identify who is the decision-maker if the person loses capacity
- Talk through resuscitation preferences (DNR/DNI) , not a one-time conversation
- Discuss feeding tube and IV hydration preferences in writing
- Ask about comfort medications for pain, anxiety, and breathing difficulty
Hospice Evaluation Questions
Ask the Hospice Team
- What does the visit schedule look like in the first week vs. ongoing?
- Who do I call at 3am if something is wrong?
- What medications will you provide and what will still be billed to insurance?
- Does hospice cover emergency respite if I need a break?
- Will you provide equipment (hospital bed, wheelchair, supplies) at no cost?
- What's the process if we need to "revoke" hospice and pursue curative care?
- Do you offer bereavement support for the family after death?
End-of-Life Wishes Documentation
Complete this with your loved one if possible, or based on conversations you've had. This is not a legal document , it supplements formal advance directives with personal wishes.
Where do they want to be?
Who should be present?
Music / environment preferences:
Spiritual / religious wishes:
Funeral pre-arranged? (Y/N)
Location of will / documents:
Organ donation wishes:
Other important wishes:
Legal Documents Tracker
| Document | Completed? (Y/N) | Location | Attorney / Notary | Last Reviewed |
|---|---|---|---|---|
| Healthcare Proxy / Medical POA | ||||
| Financial / Durable POA | ||||
| Living Will / Advance Directive | ||||
| POLST / MOLST Form | ||||
| Last Will & Testament | ||||
| DNR Order (if applicable) | ||||
| Guardianship / Conservatorship |
04
Caregiver Self-Care Module
Caregiver burnout is not a character flaw. It is a predictable physiological response to sustained high-demand caregiving without adequate recovery. The question is not whether you will be affected , it is whether you catch it early enough to do something about it.
Burnout Early Warning Signs
Take This Seriously
Burnout impairs judgment, increases medication errors, and erodes the quality of care you're providing. Recognizing these signs early is not a weakness , it is how you protect the person you're caring for.
Physical Signs
- Persistent fatigue that sleep doesn't fix
- Frequent illness (immune suppression)
- Headaches, back pain, muscle tension
- Appetite or weight changes
- Skipping your own medical appointments
Emotional Signs
- Resentment toward the person you're caring for
- Feeling trapped, hopeless, or without choices
- Crying spells or feeling numb
- Loss of pleasure in things you used to enjoy
- Feeling like you're "just going through the motions"
Behavioral Signs
- Withdrawing from friends and family
- Increased alcohol or substance use
- Snapping at people more than usual
- Neglecting basic needs (meals, hygiene, sleep)
- Feeling like you can't leave, even when relief is available
Cognitive Signs
- Difficulty concentrating or making decisions
- Increased forgetfulness
- Feeling overwhelmed by simple tasks
- Catastrophic thinking ("nothing will ever get better")
- Inability to plan ahead or imagine the future
Daily Practices That Actually Help
These are not aspirational. They are minimum viable recovery practices , the science-backed basics that prevent the cascade from fatigue into clinical burnout.
| Practice | Time Required | What It Does | Weekly Goal | Track (✓) |
|---|---|---|---|---|
| Physical movement (walking, stretching) | 20–30 min | Regulates cortisol, improves sleep | 5×/week | |
| Uninterrupted sleep | 7–8 hours | Memory, mood, immune function | Nightly goal | |
| Social contact (not caregiving-related) | 30 min | Reduces isolation, maintains identity | 3×/week | |
| Respite (structured time off) | 4+ hours | Nervous system reset | 1×/week min | |
| Personal medical care | As scheduled | Catch your own health issues | Don't skip | |
| Something you enjoy (your choice) | Any amount | Maintains sense of self | Daily goal |
Help-Seeking , When and How
It Is Time to Ask for Help When:
- You are providing more than 40 hours of care per week without regular breaks
- You haven't had a full day off in more than a month
- You have had thoughts of harming yourself or wishing the person would die , these are signs of severe burnout and require immediate professional support, not shame
- You are missing your own medications or medical appointments regularly
- You feel afraid to leave because you don't trust anyone else to provide care
- Your own health is noticeably declining
My Support Plan
My doctor / therapist:
The person I call when overwhelmed:
My scheduled respite day/time:
My support group (if any):
Crisis line (24/7): SAMHSA: 1-800-662-4357 · Caregiver Help Desk: 1-855-227-3640
Monthly Wellbeing Check-In
| Month | Burnout Level (1–10) | Days with Respite | Biggest Stressor | One Thing That Helped | Action for Next Month |
|---|---|---|---|---|---|
05
Family Coordination Templates
Families fracture under caregiving pressure not because they don't love each other , but because no one defined the roles, no one had the hard conversation about money, and the primary caregiver silently absorbed everything until they couldn't anymore. These templates give your family the structure to avoid that.
Family Care Team , Contact Directory
| Name | Relationship | Phone | Location | Primary Role | |
|---|---|---|---|---|---|
Shared Care Calendar , Weekly Template
Copy this template weekly. Assign names not tasks , "Monday evening: Jamie" is more reliable than "Monday evening: whoever is free."
| Day | Morning (6am–12pm) | Afternoon (12–6pm) | Evening (6pm–10pm) | Overnight | Special Appointments |
|---|---|---|---|---|---|
| Monday | |||||
| Tuesday | |||||
| Wednesday | |||||
| Thursday | |||||
| Friday | |||||
| Saturday | |||||
| Sunday |
Task Delegation Matrix
List every recurring task. Assign one primary person and one backup. "TBD" is not an answer , it means no one is responsible.
| Task / Responsibility | Frequency | Assigned To (Primary) | Backup Person | Notes / Special Instructions |
|---|---|---|---|---|
| Doctor appointments | As needed | |||
| Medication management | Daily | |||
| Grocery & household supplies | Weekly | |||
| Cooking / meal prep | Daily | |||
| Bill paying / finances | Monthly | |||
| Insurance communications | As needed | |||
| Home maintenance | As needed | |||
| Transportation to appointments | As needed | |||
| Bathing assistance | Daily/weekly | |||
| Overnight coverage | As needed | |||
| Family communication updates | Weekly | |||
| Research / care planning | As needed | |||
Family Communication Log
Document key conversations , medical decisions, financial decisions, care plan changes. Protects everyone and prevents "I didn't know about that."
| Date | Participants | Topic / Decision | Outcome / Action Item | Who Follows Up |
|---|---|---|---|---|
Care Handoff , Shift Notes Template
Use this every time you hand off care to another person. Gaps in communication are where care failures happen.
Handoff Note , Date: __________ From: __________ To: __________
How was today?
Mood / behavior:
Eating / drinking:
Medications given (times):
Activities / outings:
Watch for / Next shift:
Anything to monitor:
Upcoming appointments:
Medications due (times):
Special notes:
06
Complete Resource Directory
These organizations provide real services , not just information. Many offer free counseling, care consultations, and connections to local support. Start here before paying out of pocket.
National Organizations
Alzheimer's Association
1-800-272-3900 · alz.org · 24/7 Helpline
Free care consultations, support groups, safety programs, educational resources, and research trial matching. The 24-hour helpline connects you with dementia care specialists any time of day.
Alzheimer's Foundation of America
1-866-232-8484 · alzfdn.org
Free memory screening, social work counseling, education programs, and care navigator services for families nationwide.
AARP Caregiver Resource Center
1-877-333-5885 · aarp.org/caregiving
One-on-one phone support from AARP care guides, plus tools for benefits navigation, care planning, and employer negotiations for working caregivers.
National Alliance for Caregiving
caregiving.org
Research, policy advocacy, and connections to local caregiver support programs. Good starting point for understanding your legal rights as a caregiver.
Eldercare Locator
1-800-677-1116 · eldercare.acl.gov
U.S. Administration on Aging public service that connects older adults and caregivers to local services , transportation, meals, legal aid, caregiver support. Enter your zip code to find what's near you.
Benefits.gov / BenefitsCheckUp
benefits.gov · benefitscheckup.org
Free tools to identify every federal and state benefit your family may qualify for , Medicare savings programs, utility assistance, medication subsidies, and more.
Family Caregiver Alliance , National Center on Caregiving
1-800-445-8106 · caregiver.org
Fact sheets, webinars, and one-on-one consultations with care specialists. Particularly strong on care transitions and facility evaluations.
Lewy Body Dementia Association
1-833-LBDA-NOW · lbda.org
Specialized resource for the second most common form of progressive dementia. Peer support network, diagnostic guidance, and medication safety resources specific to LBD.
Government Programs
Medicare (Part A & B)
1-800-MEDICARE (1-800-633-4227) · medicare.gov
Covers hospital care, some skilled nursing facility care, home health, and hospice. Does NOT cover custodial (non-medical) long-term care. Ask about the Medicare Annual Wellness Visit, which includes cognitive assessment.
Medicaid , Long-Term Services & Supports (LTSS)
medicaid.gov · your state Medicaid office
Unlike Medicare, Medicaid can cover long-term care costs including nursing facility care and home-based care , but eligibility rules vary significantly by state. Contact your state Medicaid office to understand the spend-down process and asset rules.
VA Benefits (Veterans)
1-800-827-1000 · va.gov/health-care/about-va-health-benefits
Veterans with service-connected conditions may qualify for the Aid & Attendance benefit (up to ~$2,300/month), home health care, adult day services, respite care, and caregiver support through the Program of Comprehensive Assistance for Family Caregivers (PCAFC).
National Family Caregiver Support Program
acl.gov/programs/support-caregivers
Federally funded program through Area Agencies on Aging providing counseling, respite care, supplemental services, and training for family caregivers , often at no cost.
Social Security Disability Income (SSDI) & SSI
1-800-772-1213 · ssa.gov
If the person you're caring for is under 65 and cannot work due to dementia, they may qualify for SSDI. Supplemental Security Income (SSI) provides additional income support based on need.
Respite & Support Services
ARCH National Respite Network
archrespite.org · Respite Locator: archrespite.org/respitelocator
Find respite care services in your area , in-home respite, adult day programs, and residential respite. Many programs are low-cost or sliding scale.
Alzheimer's Association , Support Group Finder
alz.org/help-support/community/support-groups
In-person and virtual support groups for dementia caregivers. Meeting others who understand what you're going through is one of the most effective interventions for caregiver wellbeing.
SAMHSA Mental Health Helpline
1-800-662-4357 · findtreatment.gov
24/7 treatment referral and information for caregivers experiencing depression, anxiety, or substance use issues. Free, confidential, available in English and Spanish.
My Local Resources , Fill In
| Service Type | Organization Name | Phone / Website | Hours | Notes |
|---|---|---|---|---|
| Area Agency on Aging | ||||
| Local Alzheimer's chapter | ||||
| Adult day program | ||||
| In-home care agency | ||||
| Memory care facility (researched) | ||||
| Transportation service | ||||
| Meals on Wheels / meal service | ||||
| Legal aid / elder law attorney | ||||
| Social worker / case manager | ||||
| Support group | ||||
07
All Templates & Checklists
Quick-reference index of every template in this guide, plus additional printable checklists for common caregiving situations.
Templates Included in This Guide
Section 1 , Medications
- ✓ Anxiety Symptom Weekly Tracker
- ✓ Hallucination Log
- ✓ Sleep Pattern Two-Week Log
- ✓ Master Medication List
- ✓ Doctor Visit Question Builders (×3)
Section 2 , Progression
- ✓ Red Flag Escalation Checklist
- ✓ ADL Assessment Worksheet
- ✓ Stage Overview Reference
Section 3 , Advanced Care
- ✓ Palliative Care Readiness Checklist
- ✓ Hospice Evaluation Questions
- ✓ End-of-Life Wishes Worksheet
- ✓ Legal Documents Tracker
Section 4 , Self-Care
- ✓ Burnout Signs Checklists (×4)
- ✓ Daily Practices Tracker
- ✓ My Support Plan
- ✓ Monthly Wellbeing Check-In
Section 5 , Family Coordination
- ✓ Family Care Team Directory
- ✓ Weekly Care Calendar
- ✓ Task Delegation Matrix
- ✓ Family Communication Log
- ✓ Care Handoff Note Template
Section 6 , Resources
- ✓ National Resource Directory
- ✓ Government Programs Guide
- ✓ My Local Resources Worksheet
Home Safety Audit Checklist
Bathroom Safety
- Grab bars installed in shower and near toilet
- Non-slip mats in shower and on floor
- Hot water heater set to 120°F or below
- Medications locked or removed from bathroom
- Shower chair or tub bench in place
Kitchen Safety
- Stove knob covers or stove lock installed
- Sharp knives stored safely out of reach
- Smoke and carbon monoxide detectors working
- Cleaning products locked or removed
- Expired food regularly cleared out
Fall Prevention
- Rugs secured or removed
- Adequate lighting in all areas, especially at night
- Night lights in hallway, bathroom, bedroom
- Clear pathways , no cords or clutter on floor
- Handrails on all stairs, both sides if possible
Wandering Prevention
- Door alarms or motion sensors on exits
- Deadbolt or door alarm at a height not easily reached
- Medical ID bracelet with name and phone number
- Registered with local police non-emergency program (MedicAlert Safe Return)
- Recent photo available in case of emergency
Emergency Information Card , Print & Post
Emergency Information for: ___________________________
Date of birth:
Primary diagnosis:
Primary caregiver:
Caregiver phone:
Secondary contact:
Secondary phone:
Primary care doctor:
Doctor phone:
Preferred hospital:
Insurance / ID #:
DNR on file? (Y/N):
Allergies:
Current medications (or see attached list):
Special instructions for first responders / hospital staff:
Annual Care Review Checklist
Review these items once a year , or whenever there's a significant change in health, living situation, or care needs.
- Review and update advance directives , do they still reflect their wishes?
- Review and update power of attorney , is the designated person still the right choice?
- Complete ADL assessment (Section 2) , has care level changed?
- Review medication list with primary care doctor , any that can be stopped?
- Home safety audit , any new hazards given changed mobility?
- Review financial situation , costs, benefits, insurance coverage
- Reassess caregiver needs , is the care arrangement sustainable?
- Research memory care facilities , update the list, check waitlists
- Update emergency information card
- Reconnect with local Area Agency on Aging for updated services
- Schedule your own medical checkup (caregiver health matters)
- Family meeting: everyone aligned on care plan and responsibilities?
You are doing more than most people will ever understand.
This guide was built by people who have been in this , not just caregiving experts, but families who learned the hard way what needed to be on paper and what needed to be talked about. Come back to it when you need it. It will be here.
Presence by Arcline Group · presence@arcline-group.polsia.app