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Parkinson’s Disease Dementia: A Complete Guide for Families

parkinson's disease dementia

Parkinson’s disease is the second most common neurodegenerative disease worldwide, currently affecting an estimated 9.4 million people globally and approximately one million in the United States. While best known for causing tremors, stiffness, and difficulty with movement, Parkinson’s also affects cognition. As the disease progresses, many people develop what’s known as Parkinson’s disease dementia—a complication that significantly impacts both the person with Parkinson’s and their family.

Understanding Parkinson’s disease dementia helps families prepare for changes ahead and make informed decisions about care. This guide covers what causes Parkinson’s disease dementia, how to recognize symptoms, current treatment options, and how professional home care can help your loved one maintain quality of life.

How Common Is Parkinson’s Disease Dementia?

Cognitive changes are among the most common non-motor symptoms of Parkinson’s disease. Research shows that 25% to 30% of people already have mild cognitive impairment at the time of their Parkinson’s diagnosis. As the disease progresses, 50% to 70% of patients experience cognitive problems, and dementia affects nearly half of people within 10 years of diagnosis.

A 2024 meta-analysis published in Movement Disorders found that the annual risk of developing dementia in people with Parkinson’s is approximately 4.5%, and people with Parkinson’s are more than three times as likely to develop dementia compared to those without the disease. Approximately 1.7 million people globally are affected by Parkinson’s disease dementia, though this number is expected to rise as the population ages.

What Causes Parkinson’s Disease Dementia?

Scientists have identified several brain changes associated with both Parkinson’s disease and its cognitive symptoms. The primary culprit is the accumulation of abnormal deposits of the protein alpha-synuclein, which form clumps known as Lewy bodies—named after the German neurologist Friedrich Lewy, who first described them in 1912.

Lewy bodies disrupt normal brain function by interfering with chemical messengers called neurotransmitters. In Parkinson’s disease, dopamine-producing neurons are damaged, causing movement problems. As Lewy bodies spread to other brain regions, they also affect acetylcholine, a neurotransmitter critical for memory and thinking. Research shows that people with Parkinson’s disease dementia actually have greater cholinergic deficits than people with Alzheimer’s disease who have similar levels of cognitive impairment.

A 2025 study from the Parkinson’s Foundation found that brain inflammation and the buildup of another protein called tau are early drivers of cognitive decline in Parkinson’s. Researchers discovered that people at higher risk for dementia showed more brain inflammation and performed worse on cognitive tests—a finding that could eventually help identify those at greater risk before symptoms become severe.

Many people with Parkinson’s disease dementia also have plaques and tangles in the brain—the same protein deposits found in Alzheimer’s disease. This overlap helps explain why some people develop cognitive problems earlier or more severely than others.

Parkinson’s Disease Dementia vs. Lewy Body Dementia

You may have heard the term Lewy body dementia and wondered how it relates to Parkinson’s disease dementia. The distinction can be confusing because both conditions involve Lewy bodies in the brain and share many symptoms.

Lewy body dementia is actually an umbrella term that encompasses two related conditions:

  • Parkinson’s disease dementia (PDD) — Cognitive impairment that develops in someone with established Parkinson’s disease, typically after years of living with motor symptoms
  • Dementia with Lewy bodies (DLB) — Cognitive symptoms appear first or within one year of motor symptoms

The key difference is timing. If someone has had Parkinson’s disease for years and then develops dementia, it’s classified as Parkinson’s disease dementia. If cognitive problems appear early—before or around the same time as movement symptoms—the diagnosis is dementia with Lewy bodies.

Despite this clinical distinction, a 2024 study published in Movement Disorders Clinical Practice concluded that PDD and DLB are essentially expressions of the same underlying disease at different stages. Both show widespread Lewy body pathology and similar patterns of brain changes at autopsy. For families, this means many of the same care strategies and treatments apply to both conditions.

Symptoms of Parkinson’s Disease Dementia

People with Parkinson’s disease typically experience motor symptoms first—the cognitive component often appears later as the disease progresses. Understanding both types of symptoms helps families recognize changes that may indicate the development of dementia.

Motor Symptoms of Parkinson’s Disease

  • Tremors in the hands, arms, legs, and jaw
  • Rigidity and stiffness in the limbs and trunk
  • Slowness of movement (bradykinesia)
  • Loss of balance and coordination
  • Difficulty speaking or soft speech
  • Facial masking (reduced facial expressions)
  • Difficulty swallowing
  • Stooped posture and shuffling gait

Cognitive and Psychiatric Symptoms

When cognitive symptoms become severe enough to interfere with daily activities, it’s classified as Parkinson’s disease dementia. Common symptoms include:

  • Problems with attention and concentration
  • Difficulty with executive function (planning, organizing, problem-solving)
  • Slowed thinking and processing speed
  • Visuospatial difficulties (judging distances, navigating spaces)
  • Memory problems, particularly with recall
  • Confusion and disorientation
  • Personality and mood changes
  • Depression and anxiety
  • Apathy and loss of motivation
  • Visual hallucinations (seeing things that aren’t there)
  • Delusions (false beliefs)
  • Sleep disturbances, including REM sleep behavior disorder

Visual hallucinations and fluctuating attention are particularly characteristic of Parkinson’s disease dementia. Some people may have clear, lucid periods followed by episodes of confusion—a pattern called cognitive fluctuations. These symptoms can be distressing for both the person experiencing them and family members providing care.

Risk Factors for Developing Parkinson’s Disease Dementia

Not everyone with Parkinson’s disease will develop dementia. Research has identified several factors that increase the risk:

  • Older age and older age at Parkinson’s diagnosis
  • Longer disease duration — dementia risk increases as Parkinson’s progresses
  • More severe motor symptoms, particularly postural instability and gait problems
  • Mild cognitive impairment (MCI) at or soon after diagnosis
  • REM sleep behavior disorder
  • Visual hallucinations without dementia
  • Depression
  • Certain genetic factors, including GBA gene mutations

A 2025 study also linked long-term exposure to air pollution, particularly fine particulate matter (PM2.5), to higher rates of Lewy body dementia—highlighting the importance of environmental factors in brain health.

Current Treatments for Parkinson’s Disease Dementia

While there is no cure for Parkinson’s disease dementia, several treatments can help manage symptoms and improve quality of life. Treatment typically involves a combination of medications for motor, cognitive, and psychiatric symptoms.

Medications for Cognitive Symptoms

→ Rivastigmine (Exelon) — The only FDA-approved medication specifically for Parkinson’s disease dementia. This cholinesterase inhibitor increases acetylcholine levels in the brain. Studies show it provides moderate improvements in cognition, attention, executive function, and behavioral symptoms. Available as oral capsules, liquid, or a transdermal patch.

→ Donepezil and galantamine — Other cholinesterase inhibitors are sometimes used off-label, though the evidence is less robust than for rivastigmine.

Medications for Hallucinations and Delusions

→ Pimavanserin (Nuplazid) — The only FDA-approved treatment for Parkinson’s disease psychosis (hallucinations and delusions). In 2024, the FDA updated the label to clarify that pimavanserin can be used for patients with Parkinson’s disease psychosis, whether or not they also have dementia. Unlike traditional antipsychotics, pimavanserin does not worsen motor symptoms or cognitive function.

→ Quetiapine and clozapine — Atypical antipsychotics are sometimes used when other treatments aren’t effective. Clozapine requires regular blood monitoring.

▶ Important: Most antipsychotic medications can worsen Parkinson’s motor symptoms and carry serious risks for people with dementia. Any medication changes should be made only under close supervision by a neurologist or movement disorder specialist.

Treatments for Motor Symptoms

Levodopa and other dopaminergic medications remain the gold standard for managing Parkinson’s motor symptoms. In 2024-2025, new delivery methods were approved, including Crexont (extended-release oral capsules) and the Vyalev pump (continuous subcutaneous infusion) to provide more consistent symptom control.

For advanced Parkinson’s disease, the FDA approved adaptive deep brain stimulation (aDBS) in February 2025—a groundbreaking technology that continuously monitors brain activity and delivers precisely calibrated electrical pulses to keep symptoms at bay.

Research and Emerging Treatments

Significant research is underway to find treatments that can slow or stop the progression of Parkinson’s disease and its cognitive symptoms:

  • Prasinezumab entered Phase III clinical trials in 2025—this antibody targets alpha-synuclein protein buildup and could potentially slow disease progression
  • Ambroxol, a common cough medicine in Europe, showed promise in a 2025 study for stabilizing symptoms in Parkinson’s disease dementia patients over 12 months
  • Stem cell therapies showed safety and increased dopamine production in early studies
  • Gene therapies are being developed that could provide continuous neuroprotection

The Importance of Non-Pharmacological Approaches

Medications are just one piece of managing Parkinson’s disease dementia. Research consistently shows that non-pharmacological interventions play a vital role in maintaining function and quality of life:

✓ Physical exercise — Aerobic exercise has been shown to improve executive function and may help protect brain health

✓ Cognitive stimulation — Engaging in mentally stimulating activities can help maintain cognitive abilities

✓ Physical therapy — Helps maintain mobility, balance, and independence

✓ Occupational therapy — Provides strategies to adapt daily activities and maintain independence

✓ Speech therapy — Addresses swallowing difficulties and communication challenges

✓ Consistent daily routines — Structure reduces confusion and anxiety

✓ Social engagement — Maintaining connections with family and friends supports emotional well-being

Supporting Family Caregivers

Caring for someone with Parkinson’s disease dementia is demanding. A 2024 scoping review of caregiver burden found that the unique combination of motor symptoms, cognitive impairment, and behavioral changes in Parkinson’s disease creates significant challenges for family caregivers—affecting their physical health, emotional well-being, social connections, and finances.

Research has identified factors that increase caregiver burden:

  • Severity of cognitive impairment and dementia
  • Psychosis, hallucinations, and behavioral changes
  • Sleep disturbances in the person with Parkinson’s
  • Falls and safety concerns
  • Increasing hours of daily caregiving
  • Caregiver’s own health problems and lack of support

The study found that caregivers of male patients and those caring for someone with dementia plus psychosis experience particularly high strain. Interventions that have shown promise include cognitive-behavioral therapy for caregivers, mindfulness training, respite care, and combined patient-caregiver programs like cognitive stimulation therapy.

How Professional Home Care Can Help

Living with Parkinson’s disease dementia is challenging, but with the right support, many people can remain safely in the comfort of their own home. Professional non-medical home care provides practical assistance that addresses the unique needs of people with Parkinson’s disease dementia while giving family caregivers essential respite.

Safety and mobility support: Parkinson’s increases fall risk, and cognitive changes can compound safety concerns. Professional caregivers provide standby assistance for walking, transfers, and navigating the home. They can help implement safety modifications and provide supervision during activities that present risk.

Medication reminders: People with Parkinson’s disease often take multiple medications on complex schedules. Cognitive changes make it difficult to remember doses and timing. Caregivers provide reminders and help ensure medications are taken correctly—critical for maintaining symptom control.

Personal care assistance: As motor and cognitive symptoms progress, daily activities like bathing, dressing, grooming, and toileting become increasingly difficult. Professional caregivers provide dignified assistance while encouraging the person to do as much as they can independently.

Meal preparation and nutrition: Swallowing difficulties, reduced appetite, and difficulty with meal preparation are common. Caregivers prepare nutritious meals, assist with eating when needed, and ensure adequate hydration—all of which are important for overall health and medication effectiveness.

Transportation: Most people with Parkinson’s disease eventually stop driving. Professional caregivers provide transportation to medical appointments, therapy sessions, and social activities—helping maintain connections that support mental and emotional health.

Cognitive engagement: Mental stimulation helps maintain cognitive function. Caregivers engage their clients in conversation, reminiscence, puzzles, games, and activities they enjoy. This one-on-one attention provides meaningful interaction that benefits both cognition and mood.

Respite for family caregivers: Perhaps most importantly, professional home care gives family caregivers time to rest, attend to their own health, maintain employment, and prevent the burnout that affects so many Parkinson’s caregivers. Even a few hours of regular respite can significantly reduce caregiver stress.

We hope this guide to Parkinson’s disease dementia has been helpful for your family. If you have questions about caring for a loved one with Parkinson’s disease dementia, contact All Heart Home Care at (619) 736-4677. As a veteran-owned, nurse-led home care agency serving San Diego County since 2014, we understand the complex needs of families navigating neurodegenerative diseases. We offer complimentary in-home consultations and would welcome the opportunity to discuss how our caregivers can support your family.

This article is for informational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. Parkinson’s disease dementia is a complex condition that requires individualized care from qualified healthcare providers. Always consult your loved one’s neurologist or movement disorder specialist before making changes to medications or treatment plans. All Heart Home Care provides non-medical supportive care and does not provide medical services.

References

  1. Gibson, J.S., et al. (2024). Risk of Dementia in Parkinson’s Disease: A Systematic Review and Meta-Analysis. Movement Disorders. doi.org/10.1002/mds.29918
  2. Parkinson’s Foundation. (2025). Statistics. parkinson.org/understanding-parkinsons/statistics
  3. Parkinson’s Foundation. (2025). Top Parkinson’s Science News Articles of 2025. parkinson.org/blog/science-news/2025-top-science-news
  4. Lewy Body Dementia Association. (2024). New Research Supports Nuplazid (Pimavanserin) Use in Parkinson’s Disease Dementia. lbda.org
  5. American Parkinson’s Disease Association. (2024). Lewy Bodies, Dementia, and Parkinson’s – What Does it all Mean? apdaparkinson.org
  6. National Institute of Neurological Disorders and Stroke. Parkinson’s Disease: Challenges, Progress, and Promise. ninds.nih.gov
  7. Aamodt, W.W., et al. (2024). Caregiver Burden in Parkinson’s Disease: A Scoping Review of the Literature from 2017-2022. Journal of Geriatric Psychiatry and Neurology. doi.org/10.1177/08919887231195219

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About the author

Eric Barth, co-founder and CEO of All Heart Home Care San Diego

Eric Barth

CEO, All Heart Home Care

Eric Barth is the founder and CEO of All Heart Home Care™, an award-winning San Diego agency dedicated to providing compassionate, personalized in-home care for seniors. As the writer behind the All Heart Home Care blog, Eric shares insights and stories drawn from years of hands-on experience leading one of San Diego’s most trusted home care teams.

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Additional FAQ's on Digital Home Care System

Yes. HITRUST CSF Certified security—same gold standard hospitals use. More secure than paper.

Extremely rare (99.9% uptime), but caregivers can work in offline mode if connectivity is temporarily lost. Care continues without interruption. Documentation syncs automatically when connection returns.

Caregivers document throughout their shift in real-time. Notes are typically finalized and visible in Family Room within minutes of the caregiver clocking out.

We can set up Family Room accounts for as many family members as you want—local siblings, children in other states, anyone you authorize. Everyone sees the same information. No limit on number of accounts.

Yes. Family Room includes secure document storage. Upload medical records, insurance cards, POLST forms, medication lists, doctor’s instructions, photos—anything important. All authorized family members can access these documents. No more searching for forms.

We update the digital care plan immediately, and all caregivers receive instant notification of changes. This is one of the biggest advantages over paper—updates reach everyone simultaneously, not gradually over days or weeks.

Absolutely. Family Room is a tool for families who want it, not a replacement for human connection. We’re always reachable by phone at (619) 736-4677. Many families use both—portal for quick updates, phone calls for detailed conversations.

We train every caregiver on the WellSky mobile app before their first shift. The app is intuitive—designed specifically for caregivers, not engineers. If someone can text and use GPS navigation, they can use our caregiver app. And we provide ongoing support.

Yes. The Family Room care calendar shows upcoming shifts with caregiver names and times. You’ll know exactly who’s coming and when. No more surprise caregiver switches.

Use the two-way messaging feature in Family Room. Send your message, and the caregiver receives an instant notification on their mobile app. They’ll see it and can respond or confirm receipt immediately.

Yes. All notes are searchable. Want to see every mention of “appetite” from the past month? Type it in the search bar and find all relevant notes instantly. No more flipping through pages of handwritten entries.

You can access the complete care history from the day Family Room access began. Review notes from last week, last month, or since care started. Historical data helps identify patterns over time.

Family members cannot delete caregiver documentation—that’s protected and maintained by All Heart for record-keeping purposes. You can delete your own uploaded documents, but we can often recover those if needed within a certain timeframe.

With your authorization, we can provide limited Family Room access to healthcare providers. This allows better coordination between home care and medical teams. You control exactly who has access and what they can see.

Family Room works both ways. You can access it through any web browser (Chrome, Safari, Firefox, Edge) on your computer, or download the mobile app for easier access on your phone or tablet. Your choice.

All authorized Family Room users see the same care information—we can’t create different access levels for different family members. However, you (as the primary contact) control who gets Family Room access in the first place. If family dynamics are challenging, you decide who receives login credentials.

The messaging system shows when messages are delivered and read. You’ll see confirmation that the caregiver received and opened your message. For critical information, you can also call our office to ensure the message was received.

Yes. You can print individual shift notes, date ranges, or specific types of documentation (like Change of Condition reports) directly from Family Room. Useful for doctor appointments or insurance purposes.

If your loved one transitions to hospice, hospital, or another care setting, we can maintain your Family Room access for a transition period so you have complete records. After care ends, we provide a final data export if requested, then access is closed according to your wishes and legal requirements.

Yes. Family Room is accessible from anywhere with internet connection. If you’re traveling abroad, you can still check on your loved one’s care. The system works globally.

Family Room doesn’t support selective information sharing—all authorized users see the same care documentation. For private family communications, you’d need to use personal email, phone, or text outside the Family Room system.

Change of Condition reports automatically alert you when caregivers document significant health changes. For custom alerts (like specific behaviors or situations), talk to our office—we may be able to add special flags to your loved one’s care plan that trigger notifications.

We typically set up Family Room access during your initial care planning meeting, before the first caregiver shift. You’ll have login credentials and a brief tutorial on how to use the portal. Most families are viewing their first shift notes within 24 hours of care beginning.

Complete Security & Privacy Information

HITRUST CSF Certification - What This Means

HITRUST CSF (Common Security Framework) is the most rigorous security certification in healthcare. It's harder to achieve than HIPAA compliance alone. This certification requires:

  • Annual independent security audits by certified assessors
  • Continuous monitoring of security controls
  • Documented policies and procedures for data protection
  • Employee security training and background checks
  • Incident response and disaster recovery plans
  • Regular penetration testing to identify vulnerabilities

Why it matters: If it’s secure enough for hospital patient records, it’s secure enough for your loved one’s care information.

Bank-Level Encryption Explained

Data in Storage (At Rest):

  • All information stored on WellSky servers is encrypted using AES-256 encryption
  • This is the same encryption standard used by banks and the U.S. military
  • Even if someone physically accessed the servers, they couldn't read the data without encryption keys

Data in Transmission (In Transit):

  • When you access Family Room from your phone or computer, all data traveling between your device and our servers is encrypted using TLS 1.2 or higher
  • This is the same technology that protects your online banking
  • The "lock" icon in your browser address bar confirms this encryption

What this means: Even if someone intercepted the data (extremely unlikely), they would only see scrambled, unreadable information.

Strict Access Controls

Who Can See What

Family Member Access:

  • You decide exactly which family members get Family Room login credentials
  • Each person has their own unique username and password
  • You can add or remove access at any time
  • Family members can only view information for your loved one—no one else's

Caregiver Access:

  • Caregivers only see care plans for clients they're actively assigned to
  • When a caregiver is no longer working with your loved one, their access to that care plan is immediately revoked
  • Caregivers cannot access billing information or family contact details

Staff Access:

  • All Heart staff access is role-based and monitored
  • Office staff see only the information necessary for their job function
  • Nursing supervisors have broader access for quality oversight
  • All access is logged with timestamps

Audit Trail:

  • Every action is logged: who accessed what information, when, and from where
  • These logs are regularly reviewed for any suspicious activity
  • Logs are maintained for compliance and security purposes

HIPAA Compliance - Federal Protection

The Health Insurance Portability and Accountability Act (HIPAA) establishes federal standards for protecting health information. Our compliance includes:

Privacy Rule Compliance:

  • Your loved one's health information is never shared without authorization
  • You control who has access to information
  • Clear privacy policies explain how information is used

Security Rule Compliance:

  • Administrative safeguards (policies, training, access management)
  • Physical safeguards (secure facilities, workstation security)
  • Technical safeguards (encryption, authentication, audit controls)

Breach Notification:

  • In the extremely unlikely event of a data breach, affected individuals are notified promptly as required by law
  • We maintain insurance and procedures for breach response

Business Associate Agreements:

  • WellSky (our technology provider) has signed formal agreements guaranteeing HIPAA compliance
  • All vendors with potential access to data must meet the same standards

Continuous Backup & Disaster Recovery

Automated Backups:

  • Data is backed up automatically multiple times per day
  • Backups are encrypted and stored in geographically separate secure data centers
  • This protects against hardware failure, natural disasters, or other catastrophic events

Redundancy:

  • Data is stored across multiple servers simultaneously
  • If one server fails, others immediately take over
  • No single point of failure in the system

Disaster Recovery Plan:

  • Formal, tested procedures for recovering from any disaster scenario
  • Regular drills ensure the recovery plan actually works
  • Recovery Time Objective (RTO): System restored within hours, not days
  • Recovery Point Objective (RPO): Minimal data loss (minutes, not hours)

What this guarantees: Your loved one’s care information is never truly lost. Even if an entire data center were destroyed, complete backups exist elsewhere.

99.9% Uptime Guarantee

What “99.9% uptime” means:

  • The system is available and functional 99.9% of the time
  • That translates to less than 9 hours of downtime per year
  • Most families never experience a single outage

Monitoring:

  • System performance monitored 24/7/365
  • Automated alerts notify technical teams of any issues immediately
  • Problems are often resolved before users even notice them

If the system goes down:

  • Caregivers can work in offline mode on their mobile devices
  • Care continues without interruption
  • Documentation is saved locally and syncs automatically when connection returns
  • Your loved one's care never depends on perfect internet connectivity

Multi-Factor Authentication (Optional)

For families who want extra security, we can enable multi-factor authentication (MFA):

  • Requires both password AND a code sent to your phone
  • Even if someone stole your password, they couldn't access your account without your phone
  • Optional but recommended for families with high security concerns

Mobile Device Security

Caregiver Phones:

  • WellSky mobile app requires login credentials
  • Apps lock automatically after inactivity
  • No data is stored permanently on caregiver phones—it's accessed from secure servers
  • If a phone is lost or stolen, we can remotely disable access immediately

Your Devices:

  • Family Room is accessed through secure web browsers or mobile apps
  • You can log out from any device at any time
  • Session timeouts prevent unauthorized access if you forget to log out

Security Incident Response

In the extremely unlikely event of a security concern:

  • Detection: Automated systems and staff monitoring detect potential issues immediately
  • Response: Security team investigates and responds within minutes
  • Containment: Affected systems isolated to prevent spread
  • Resolution: Issue resolved and systems secured
  • Notification: Affected users notified as required by law
  • Review: Incident analyzed to prevent future occurrences

Digital vs. Paper Security Comparison

Security Concern
Paper Binders
WellSky_Color

Who can read it?

Anyone who enters the home

Only authorized users

Can it be lost?

✔︎ — permanently

✕ — backed up continuously

Can it be damaged?

✔︎ — spills, fires, floods

✕ — stored digitally

Is access tracked?

✕

✔︎ Access logged & audited

Encryption protection?

✕

✔︎ — bank-level encryption

Updates reach everyone?

✕ — printing/distribution delays

✔︎ — instant notification

Survives disasters?

✕

✔︎ — redundant backups

HIPAA compliant?

✕ — difficult to prove

✔︎ — certified & audited

Can be accidentally discarded?

✔︎

✕ — requires a password

Verdict: Digital is significantly more secure than paper in every measurable way.

Common Security Questions

"What if I forget my password?"

Secure password reset process via email or phone verification. We verify your identity before resetting access.

"Can hackers access the system?"

Multiple layers of security make unauthorized access extremely difficult. Regular penetration testing simulates attacks to identify and fix vulnerabilities before hackers can exploit them.

"What if my phone is stolen?"

Change your password immediately from any other device. The thief would still need your password to access Family Room.

"Can All Heart staff see my credit card information?"

No. Payment processing is handled by a separate, PCI-compliant payment processor. We never see or store your full credit card number.

"What happens to the data if I stop using All Heart?"

Your data is retained according to legal requirements (typically 7 years for healthcare records), then securely deleted. You can request a copy of your data at any time.

This isn’t just secure—it’s among the most secure systems available in healthcare.

Your information is safer in our digital system than it ever was in a paper binder sitting on a kitchen counter.

Complete Care Plan Contents:

Care Goals & Priorities

  • What matters most to your family (safety, remaining at home, socialization, quality of life)
  • Family's priorities for daily care
  • Long-term care objectives

Emergency Contact Information

  • Primary and secondary emergency contacts
  • Preferred contact methods (call, text, email)
  • Contact priority order

Medical Conditions & Health History

  • Chronic conditions (dementia, Parkinson's, diabetes, heart conditions, etc.)
  • Recent hospitalizations or surgeries
  • Functional limitations (hearing, vision, mobility, speech)
  • Allergies and medication sensitivities
  • DNR status and advance directives

Mental Health & Cognitive Status

  • Dementia staging (if applicable): none, forgetful, mild, moderate, severe
  • Specific symptoms and behavioral patterns
  • Triggers that cause agitation or confusion
  • Calming strategies that work
  • Best times of day for activities
  • Communication preferences and techniques

Medications & Supplements

  • Complete medication list with dosages
  • Administration times and frequency
  • Medication reminder schedules
  • Who manages medications in the household
  • Special instructions (with food, before bed, etc.)

Mobility & Transfers

  • Mobility equipment used (walker, wheelchair, cane, gait belt)
  • Fall risk assessment
  • Transfer assistance needs
  • Use of dominant arm/hand (left or right)
  • Weight-bearing limitations

Personal Care Routines

  • Bathing preferences and frequency (shower, bath, sponge bath)
  • Grooming and hygiene assistance levels
  • Dressing assistance needs (independent, light assist, total assist)
  • Dental care and denture management
  • Skin care requirements

Meal Preparation & Dietary Needs

  • Favorite foods and meal preferences
  • Food allergies and restrictions
  • Special diets (diabetic, low-sodium, pureed, etc.)
  • Meal times (breakfast, lunch, dinner, snacks)
  • Appetite patterns and hydration goals
  • Swallowing difficulties or feeding assistance

Daily Routines & Schedules

  • Morning routine (wake time, preferences)
  • Afternoon activities and needs
  • Evening routine (dinner time, bedtime)
  • Sleep patterns and nighttime assistance
  • Napping schedule

Activities & Engagement

  • Favorite hobbies and interests
  • Activities at home (reading, games, music, crafts)
  • Activities away from home (parks, outings, restaurants)
  • Social preferences and visitor information
  • Brain health and cognitive activities

Home Environment Details

  • Gate codes and access instructions
  • Lockbox location and code
  • Parking information for caregivers
  • Pet care instructions (feeding, walking, behavior notes)
  • Safety equipment locations (grab bars, shower bench, raised toilet seat, bed rails)
  • Camera locations (if applicable - California law requires disclosure)

Transportation & Driving

  • Does client drive?
  • Caregiver transportation needs (errands, appointments)
  • Vehicle information (client's car vs. caregiver's car)
  • Parking permit requirements

Additional Important Information

  • Cultural or religious considerations
  • Language preferences
  • Communication style preferences
  • Special instructions or family notes

This comprehensive information ensures every caregiver provides consistent, personalized care from day one.

Tracking health changes that matter.

The Change of Condition form documents significant shifts in your loved one’s health—new symptoms, changes in mobility, behavioral differences, or improvements in their condition. This isn’t about minor day-to-day variations; it’s about meaningful changes that physicians, families, and caregivers need to know about.

Why have a separate form for this?

Instead of searching through weeks of caregiver narratives to find when symptoms started or conditions changed, this form puts all significant health changes in one easy-to-reference place. When doctors ask “when did the difficulty walking begin?” or family members want to understand the progression of a condition, you’ll have clear, dated documentation right at your fingertips.

What gets documented:

Each entry includes:

  • Date the change was observed
  • Description of the change in condition (symptoms, behaviors, mobility changes, cognitive shifts, or improvements)
  • Caregiver instructions based on the change (new monitoring requirements, adjusted assistance levels, safety precautions, or care plan modifications)
  • Authorization source (Client, Family, Doctor, or Agency)
  • Expiration date for temporary instructions (or marked as "Indefinitely" for ongoing changes)
  • Caregiver acknowledgments confirming they've read and understood the new instructions

Why this form matters:

Early detection changes outcomes. When caregivers notice something different—increased confusion, difficulty walking, loss of appetite, or even positive improvements like better mobility—documenting it immediately allows for faster responses.

Your family stays informed about meaningful health changes. Physicians receive accurate updates during appointments instead of relying on memory. Incoming caregivers know exactly what’s changed and what new precautions or assistance your loved one needs.

One form. Complete health timeline. Better care.

Whether tracking a temporary change after a fall or documenting the progression of a chronic condition, the Change of Condition form creates a clear health timeline. This helps everyone—doctors, family members, and our San Diego caregiver team—understand how your loved one’s needs are evolving and respond appropriately.

Proactive monitoring isn’t just good practice. It’s essential senior care.

How the Caregiver Narrative works.

Each caregiver documents their shift using a simple timeline format that captures the essential details of your loved one’s day. This structured approach ensures consistency across all caregivers and makes information easy to find.

What we document in every narrative:

  • Daily health observations and changes in condition
  • Meals, snacks, and hydration intake
  • Mobility assistance and transfer support
  • Activities completed, mood, and engagement levels
  • Social interaction, conversation topics, and preferences
  • Safety concerns or environmental changes noticed
  • Medication reminders provided (when applicable)
  • General well-being updates and family notes

Narrative Format:

Each entry follows this structure:

  • Start Date | Start Time | Caregiver Name
  • Timeline Narrative (chronological notes throughout the shift documenting activities, meals, observations, assistance provided, and any notable moments)
  • End Date | End Time | Caregiver Name

Why this format works:

This timeline approach provides clear, chronological documentation that’s easy for incoming caregivers to read and understand. Instead of wondering what happened during the previous shift, they can see exactly what your loved one ate, how they felt, what activities they enjoyed, and any health changes observed.

One record. Every shift. Complete continuity.

Whether care is short-term, long-term, or evolving, the Caregiver Narrative ensures nothing gets missed and nothing gets repeated. Your family can review the journal at any time during visits, or we can share photos of recent narratives with long-distance family members who want to stay connected and informed.

Complete transparency and peace of mind, right when you need it.

Your loved one's complete care roadmap, now available digitally.

The All Heart Customized Care Plan is completed during your initial assessment and tailored to your loved one’s specific needs, preferences, mobility level, and safety requirements.

Now fully digital and accessible on every caregiver’s phone.

We’ve gone paperless. Your care plan is accessible through our digital platform—caregivers reference it anytime, anywhere. Updates happen in real-time, so when something changes, every caregiver sees it immediately.

What's included:

Care goals, emergency contacts, medical conditions, mental health & cognitive status, medications & supplements, mobility & transfers, personal care routines, meal prep & dietary needs, daily routines, activities & engagement, and home environment details.

One plan. Every caregiver. Consistent care.

This digital approach ensures every San Diego caregiver has the same accurate, up-to-date information from day one—promoting safety, continuity, and person-centered care.

See how we organize care information. This form becomes your loved one’s digital care roadmap.