Pennsylvania Dementia Care 2026: PA Family Caregiver Guide

Caring for a Loved One with Dementia in Pennsylvania: Pennsylvania has more support for dementia families in 2026 than at any point in its history. This guide is the single map no one hands you, walking through diagnosis, paying for care, Medicaid, memory care, legal protection, and the helplines to call when you cannot do this alone.

If you are reading this because someone you love has been told the word "dementia," or because the forgetfulness you have been quietly tracking has become impossible to ignore, please slow down for a moment. You do not have to figure this out today. Pennsylvania has more support for dementia families in 2026 than at any point in its history, a brand-new state office created by Act 111 of 2024, six federally-funded CMS GUIDE Model programs that pay for care navigation and respite, two of the country's thirty NIA-designated Alzheimer's Disease Research Centers (Penn and Pitt), strong county-level helplines, and a Medicaid system that, when properly accessed, covers most of what dementia eventually requires. The challenge is not that the help does not exist. The challenge is that no one hands a Pennsylvania family a single map.

This guide is that map.

We will walk together, in plain language, through every layer of dementia caregiving in Pennsylvania in 2026: where to get diagnosed; how to get insurance to pay for ongoing memory care; how to claim the federally-funded $2,500-a-year GUIDE respite benefit if you qualify; how Pennsylvania Medicaid handles dementia (and what the 2026 income, asset, look-back, and penalty-divisor numbers actually are); how Pennsylvania's two licensed assisted-living frameworks, Personal Care Homes and Assisted Living Residences, handle memory care; what changed about guardianship under Act 61 of 2023 and Act 39 of 2025; what the Pennsylvania Inheritance Tax means for a Personal Care Agreement; and which helplines to call when you cannot do this alone at 2 a.m.

This is also a guide written specifically for you, the Pennsylvania family caregiver, who in 2026 is one of roughly 472,000 Pennsylvanians providing 835 million hours of unpaid care, valued at $17.2 billion, to a parent, spouse, or partner with Alzheimer's disease or another dementia. Fifty-six percent of you live with a chronic condition of your own. The hours you give cost you sleep, paychecks, and sometimes friendships. You deserve real help, and Pennsylvania can provide more of it than you have probably been told.

The 60-second version

If you only read one section, read this:

1. If your family member has not been formally diagnosed, call one of Pennsylvania's academic memory programs, Penn Memory Center (215-662-7810), University of Pittsburgh ADRC (412-692-2700), Geisinger Memory and Cognition Program (800-275-6401), Penn State Health Hershey, or Allegheny Health Network (412-578-3925), for a comprehensive evaluation. Diagnosis unlocks every other door.

2. If your family member has Original Medicare and a confirmed dementia diagnosis, ask each program whether they participate in the CMS GUIDE Model. Six Pennsylvania organizations do, Penn Memory Center, UPMC Division of Geriatric Medicine, Suburban Geriatrics/Abramson Senior Care (Plymouth Meeting), VNA Health System (Shamokin), VNA Central PA (Harrisburg), and Medical Associates of Erie/LECOM. GUIDE provides a dedicated care navigator, a 24/7 helpline, structured caregiver education, and up to $2,500 per year of respite for qualifying families, at no out-of-pocket cost beyond the standard Medicare Part B 20% coinsurance on the care-management visits.

3. Call the Alzheimer's Association 24/7 Helpline at 1-800-272-3900. It is free, confidential, available in 200+ languages, staffed around the clock by trained dementia specialists, and routed to your local Pennsylvania chapter (Greater Pennsylvania for 59 of 67 counties; Southeastern Pennsylvania, renamed January 2026 from "Delaware Valley", for the 8 southeastern counties).

4. Call Pennsylvania Link, the Aging and Disability Resource Center, at 1-800-753-8827. A specialist will connect you to your county Area Agency on Aging, walk through the Family Caregiver Support Program (which reimburses dementia caregivers up to $600/month out-of-pocket plus $5,000 lifetime for home modifications), and screen for Pennsylvania's other long-term-care programs.

5. If you are a veteran's family, also call the VA Caregiver Support Line at 1-855-260-3274. Veterans with service-connected conditions or wartime service may qualify for VA Aid & Attendance pension (up to $2,422–$2,871/month in 2026 depending on dependents), Veteran Directed Care, the PCAFC caregiver stipend, or VA Hospice.

6. Execute Pennsylvania durable Power of Attorney documents now, while your family member still has legal capacity. Under Act 61 of 2023, Pennsylvania courts now must consider less-restrictive alternatives, including a properly-drafted Health Care POA and Financial POA, before granting guardianship. Documents executed during mild cognitive impairment can save your family the time, expense, and dignity-cost of guardianship later.

The rest of this guide is the long version.

Pennsylvania's dementia landscape, 2026

Pennsylvania is the third-oldest state in the country by share of residents aged 65 and older, only Maine and Florida are older. According to the Alzheimer's Association's 2026 Alzheimer's Disease Facts and Figures, approximately 282,000 Pennsylvanians age 65+ are living with Alzheimer's disease. Roughly 16.2% of Pennsylvanians age 45+ report subjective cognitive decline, the early warning signal that often precedes a clinical dementia diagnosis. Pennsylvania Medicaid spends an estimated $4.6 billion per year on Alzheimer's-related care, among the largest single drivers of the state's nursing facility and Community HealthChoices budget.

Behind those numbers sit the families. Pennsylvania has roughly 472,000 unpaid family caregivers of someone with dementia, providing about 835 million hours of care a year, averaging out to 34 hours per week per caregiver. The economic value of that unpaid labor is $17.2 billion annually. Fifty-six percent of those caregivers report at least one chronic condition of their own.

Pennsylvania's caregiving terrain is as varied as its geography: 48 of the 67 counties are rural by the Center for Rural Pennsylvania's definition, and the dementia-care infrastructure is heaviest in the Philadelphia, Pittsburgh, Lehigh Valley, and Harrisburg/Hershey corridors. Northern-tier and northwestern-tier rural counties, Cameron, Forest, Sullivan, Potter, McKean, Warren, have the highest age-adjusted Alzheimer's prevalence rates in the state and the thinnest provider density. If you live in one of these counties, telehealth, regional GUIDE participants like LECOM Medical Associates of Erie and VNA Central PA, and the academic medical centers' satellite clinics will matter more for your family than they would in Philadelphia or Pittsburgh.

The single most important Pennsylvania policy change for dementia families in the last decade arrived in October 2024.

Act 111 of 2024, Pennsylvania's first ADRD Office

On October 16, 2024, Governor Josh Shapiro signed Act 111 of 2024 (originally Senate Bill 840 of the 2023–24 session), the Alzheimer's, Dementia and Related Disorders Act. The Act created Pennsylvania's first-ever Alzheimer's, Dementia and Related Disorders (ADRD) Office within the Pennsylvania Department of Aging (PDA), with a $1.9 million initial appropriation in the FY 2024–25 budget. The Act took effect approximately April 14, 2025 (180 days post-enactment) and established a 24-member ADRD Advisory Committee.

What this means for your family: Pennsylvania now has, for the first time, a dedicated state office whose job is to coordinate dementia-specific services, update the state's dementia plan, and route caregiver supports through the existing AAA and Alzheimer's Association infrastructure. The office's contact is ADRDoffice@pa.gov and (717) 783-1550. As of May 2026, a refreshed Pennsylvania State Plan for ADRD has not yet been published, the 2014 plan remains in force, but the office has signaled an update is in process and hosts public "Reimagine, ADRD Symposium" events whose recordings are posted on the PDA ADRD Office page.

Act 111 builds on Act 9 of 2022, the Alzheimer's Early Detection and Diagnosis Act, which directed the Pennsylvania Department of Health to maintain primary-care-provider resources on early detection. The DOH still hosts the Alzheimer's Provider Information page; the operational center of gravity for Pennsylvania dementia policy now sits in PDA's ADRD Office.

The medical home: where to get diagnosed and stay in care

If a family member's memory, judgment, or daily functioning has changed in a way that is not explained by depression, infection, medication side effects, sleep, or grief, a comprehensive memory evaluation is the right next step. Pennsylvania has five academic-tier programs that anchor dementia diagnosis and ongoing care, and a growing community-program network beneath them.

Penn Memory Center / Penn Medicine (Philadelphia)

Penn Memory Center is the clinical face of the Penn Alzheimer's Disease Research Center, one of approximately 30 NIA-funded ADRCs in the United States and the only one in the Pennsylvania-New Jersey-Delaware tri-state. Located at the Penn Neuroscience Center, 3400 Civic Center Boulevard, Philadelphia 19104, Penn Memory Center provides comprehensive memory evaluation, cognitive neurology and geriatric psychiatry, biomarker assessment (cerebrospinal fluid and amyloid PET), the FDA-approved anti-amyloid therapies lecanemab and donanemab, robust clinical trials access, the Caregiver Resource Center, and the Cognitive Fitness program.

Penn Memory Center is also one of two CMS GUIDE Model New Track participants in Pennsylvania, with care navigation that began July 1, 2025. To enroll in GUIDE or schedule an evaluation, call 215-662-7810 (option 3) or email GUIDE@pennmedicine.upenn.edu. No referral is required.

University of Pittsburgh ADRC and UPMC Division of Geriatric Medicine

The University of Pittsburgh ADRC at UPMC Montefiore (200 Lothrop Street, Suite 421, Pittsburgh 15213; 412-692-2700) is Pennsylvania's second NIA-designated ADRC. The UPMC Division of Geriatric Medicine at 3471 Fifth Avenue, Suite 500, Pittsburgh 15213 (412-692-4200) serves as the clinical GUIDE Model entry point. UPMC, like Penn, joined GUIDE as a New Track participant on July 1, 2025, providing comprehensive interdisciplinary assessment, written care plan, caregiver education, respite, and 24/7 helpline access.

The University of Pittsburgh Aging Institute at aging.pitt.edu houses the broader research engine, including the Center for Healthy Aging and the Center for Aging and Population Health. The VA Pittsburgh GRECC (Geriatric Research, Education and Clinical Center), co-located on the VA campus, anchors Pittsburgh-region veteran dementia services and dementia-specific REACH-VA caregiver delivery.

Geisinger Memory and Cognition Program (Danville, Wilkes-Barre, State College, NE/Central PA)

Geisinger's program is led by Glen Finney, MD, with locations in Wilkes-Barre (the public flagship clinic, opened 2018), Danville, State College, and satellite sites across northeastern and central Pennsylvania. Central scheduling is 800-275-6401.

What sets Geisinger apart for many families is its multidisciplinary "one-stop-shop", behavioral neurology, neuropsychological evaluation, speech-language pathology, social work, psychology, and a driving simulator at the Wilkes-Barre clinic (a rare resource statewide for evaluating dementia drivers). Geisinger participates in the multi-site D-CARE Study, the federally-funded trial comparing dementia care planning approaches.

Penn State Health (Hershey) and Allegheny Health Network (Pittsburgh)

Penn State Health Milton S. Hershey Medical Center runs a Cognitive Neurology Clinic in the Department of Neurology and a Geriatric Medicine East Campus Dementia Clinic. Penn State Health received a 2024–25 GEAR 2.0 grant for emergency-department-to-community-care transition research for people with dementia, meaningful for families navigating ED visits during dementia crisis.

Allegheny Health Network's Memory Disorders Clinic is anchored at the AHN Neuroscience Institute (Allegheny General Hospital and West Penn Hospital, Pittsburgh) under medical director Eric Weisman, MD. Appointments at (412) 578-3925. AHN's Massaro Family Fund nurse-navigator program, now in its third year, has served more than 795 dementia patients and families. AHN is not currently a CMS GUIDE Model participant.

Other regional programs

For families outside the five academic anchors, regional options include Jefferson Health's Vickie & Jack Farber Institute for Neuroscience (Philadelphia), Temple Health Neurosciences Center, Lehigh Valley Health Network's Memory Disorders Center (Allentown), Reading Hospital / Tower Health, and WellSpan Health's Memory Care Clinic (York). For rural families, the four GUIDE Established-Track community programs, Abramson/Suburban Geriatrics in Plymouth Meeting, VNA Health System in Shamokin, VNA Central PA in Harrisburg, and LECOM Medical Associates of Erie, are designed to deliver dementia care navigation outside the academic-medical-center model. We profile each in detail below.

CMS GUIDE Model, Pennsylvania's biggest dementia-caregiver win in 2026

Of all the new dementia programs available to Pennsylvania families in 2026, CMS GUIDE Model, Guiding an Improved Dementia Experience, is the one most likely to materially change a caregiver's daily reality. Launched July 1, 2024, GUIDE is an 8-year voluntary CMS Innovation Center model. Pennsylvania has six confirmed participants. The program covers comprehensive care navigation, 24/7 caregiver helpline access, structured caregiver training, and, for qualifying families, up to $2,500 per year of respite care at no out-of-pocket cost.

Here is what the program actually delivers, who qualifies, what it costs, and how to enroll.

What GUIDE provides

Each participating organization assigns the family a dedicated care navigator who serves as a single point of contact across diagnosis, medication management, behavioral concerns, advance-directive planning, community resources, and crisis support. The navigator coordinates a comprehensive interdisciplinary assessment of the person with dementia and the primary caregiver, develops an individualized written care plan, and revisits it on an ongoing basis.

Every GUIDE participant must operate a 24/7 helpline for enrolled families, meaning that a 2 a.m. call about agitation, a fall, a medication refusal, or a sudden change in lucidity reaches a clinician who already knows your family member's chart. For Penn Memory Center the line is 215-662-7810 (option 3); for UPMC it is 412-692-4200.

GUIDE participants also deliver structured caregiver education and support groups, "memory cafés" and other community wellness offerings, and a respite benefit (described below).

The five complexity tiers, and why they determine your respite

CMS's GUIDE Model is built on five complexity tiers stratified along two axes: (1) whether the beneficiary has a qualifying caregiver (the "dyad" path) or not (the "individual" path), and (2) the dementia stage and caregiver burden (low, moderate, or high). Tier assignment uses the Clinical Dementia Rating (CDR) or Functional Assessment Staging Tool (FAST) for dementia stage and the Zarit Burden Interview for caregiver strain. The five tiers:

1. Low Complexity Individual, no caregiver; mild-to-moderate dementia.
2. Moderate-to-High Complexity Individual, no caregiver; advanced dementia.
3. Low Complexity Dyad, caregiver present; mild dementia and low caregiver burden.
4. Moderate Complexity Dyad, caregiver present; moderate dementia or moderate caregiver burden.
5. High Complexity Dyad, caregiver present; advanced dementia and/or high caregiver burden. (Penn Memory Center labels this tier "Severe Complexity" on its participant-facing page.)

The $2,500 annual respite benefit flows only to dyad tiers with moderate or high (severe) complexity, not to the Low Complexity Dyad tier and not to either of the Individual tiers (because respite by definition requires a caregiver to relieve). This is one of the most important practical facts about GUIDE: the program assumes a caregiver, and the respite money depends on confirmed moderate-to-high caregiver burden.

If your family member is in the early stages of dementia and you, as a caregiver, are not yet experiencing high burden on the Zarit interview, your tier may be Low Complexity Dyad, meaning you receive the GUIDE care-navigation services but not the respite benefit. As the disease progresses and your tier reassesses upward, the respite benefit unlocks.

Eligibility, and the Original Medicare requirement

To enroll in GUIDE, the person with dementia must:

• Have a clinician-confirmed dementia diagnosis (or be referred for memory evaluation as part of the GUIDE intake).
• Be enrolled in Medicare Part A and Part B as primary insurance, not Medicare Advantage, not a Special Needs Plan, not Medicare hospice, not PACE/LIFE, and not be a long-term nursing-facility resident.
• Reside in the participant's service area.

The Original Medicare requirement is the largest single barrier for many Pennsylvania dementia families. Roughly half of Pennsylvania Medicare beneficiaries are now enrolled in Medicare Advantage. Switching from Medicare Advantage back to Original Medicare is possible during the Medicare Annual Enrollment Period (October 15 to December 7) or the Medicare Advantage Open Enrollment Period (January 1 to March 31), but the switch may also require a Medigap supplement to manage out-of-pocket costs, and Medigap enrollment outside your initial 6-month open enrollment is subject to medical underwriting in Pennsylvania, which can be difficult to clear with a recent dementia diagnosis. If your family member already has Original Medicare and a Medigap or is dually eligible for Medicaid, the path is much simpler.

What it costs the family

The GUIDE care-management visits are billed under Medicare Part B, which means the standard 20% coinsurance applies, unless your family member has a Medigap supplement, full-benefit Medicaid (dual-eligible), or another secondary coverage that absorbs it. The respite benefit itself is $0 out-of-pocket to the family up to the $2,500 annual cap; the GUIDE participant invoices the respite provider (in-home agency, adult day, or short-stay assisted living/nursing facility) and books it against the cap.

The six Pennsylvania participants

If you live within the service area of more than one, for example, a Philadelphia suburb served by both Abramson and Penn Memory Center, call both and ask about waiting lists, navigator caseloads, and whether the program partners with your existing primary-care or memory-care provider.

Pennsylvania Medicaid pathways for dementia care

Most Pennsylvania families eventually need Medicaid to pay for dementia care that exceeds what private resources, Medicare, and long-term-care insurance can cover. There is no shame in that, Medicaid is the largest payer of long-term-care services in the United States, and Pennsylvania has built one of the country's stronger managed-long-term-services-and-supports systems. Here is how it works for dementia in 2026.

Community HealthChoices (CHC), the Medicaid managed-care backbone

Community HealthChoices is Pennsylvania's mandatory managed-long-term-services-and-supports program for adults 21 and older who are dual-eligible (Medicare and Medicaid) or who meet Nursing Facility Clinically Eligible (NFCE) Level of Care plus financial eligibility. CHC operates statewide across five zones; all 67 Pennsylvania counties are covered.

Pennsylvania has three CHC Managed Care Organizations in 2026:

1. AmeriHealth Caritas Community HealthChoices
2. PA Health & Wellness (Centene)
3. UPMC Community HealthChoices

A common point of confusion: Highmark Wholecare and Keystone First are not CHC MCOs, they are HealthChoices Physical-Health (acute) MCOs, a separate Pennsylvania Medicaid program that covers physical-health acute care for non-LTSS Medicaid enrollees. CHC and HealthChoices are different programs run by different MCOs.

CHC covers, for dementia patients with NFCE Level of Care:

• Personal Assistance Services (PAS), hands-on caregiving in the home for activities of daily living, often the most commonly used CHC service for dementia.
• Adult Day Services (ADS), full-day structured programs at licensed adult day centers, often the highest-utility service for behaviorally-symptomatic dementia and for caregiver respite.
• Structured day programs for cognitive engagement.
• Behavioral support services, in-home behavioral plan development for dementia-related behaviors.
• Respite in-home and short-stay assisted living or nursing facility.
• Personal Emergency Response System (PERS), call buttons.
• Home modifications and assistive equipment.
• Non-medical transportation to medical and community appointments.
• Counseling services.
• Services My Way (SMW), Pennsylvania's CHC participant-directed model, which lets the participant hire and manage their own direct care worker, including (importantly) hiring an adult child as a paid caregiver (Pennsylvania does not allow spouses to be paid under SMW, though spouses can sometimes be paid through OBRA Waiver in narrow circumstances).

CHC eligibility numbers in 2026:

• Income cap: $2,982 per month for an individual (300% of the 2026 SSI Federal Benefit Rate of $994).
• Asset cap: $2,000 base + $6,000 disregard = $8,000 effective for a single applicant whose income is at or below the cap.
• Spousal protection: Community Spouse Resource Allowance up to $162,660 (2026 maximum) and Minimum Monthly Maintenance Needs Allowance of $2,644/month (effective July 1, 2025 through June 30, 2026), with a Maximum Monthly Maintenance Needs Allowance of $4,066.50/month (effective January 1, 2026).
• Look-back: 60 months for both nursing-facility Medicaid and HCBS waivers under CHC.
• 2026 penalty divisor: $421.20/day ($12,811.50/month), the figure used to calculate ineligibility periods for disqualifying transfers.

CHC is not a waiver-list program. There is no waiting list, if the applicant meets NFCE Level of Care and financial eligibility, enrollment is mandatory and immediate. This is one of the most important practical realities for Pennsylvania dementia families: unlike many states' HCBS waivers, Pennsylvania's CHC delivers Medicaid LTSS without years on a waiting list.

A diagnosis of dementia does not automatically confer NFCE, Pennsylvania requires functional assessment via the Functional Eligibility Determination, conducted at no cost by your regional Independent Enrollment Broker. Plan for this assessment to take 60–90 minutes and to focus on activities of daily living (bathing, dressing, transferring, toileting, eating, mobility) and on cognitive supervision needs. Bring documentation of any falls, wandering events, medication errors, or unsafe behaviors, these matter heavily in the assessment.

OBRA Waiver, for early-onset dementia under 60

Pennsylvania's OBRA Waiver, governed by 55 Pa. Code Ch. 52, serves adults aged 18–59 with severe physical disability meeting Intermediate Care Facility / Other Related Conditions level of care. For families with early-onset Alzheimer's, frontotemporal dementia, or genetic familial Alzheimer's that progresses to severe physical disability before age 60, OBRA can be the right entry point. After age 60, the participant transitions to CHC.

OBRA's most-overlooked benefit for dementia families: a parent of an adult child with disabling dementia can be paid as a Direct Care Worker under OBRA's participant-directed services. The parent-of-minor exclusion that prevents parents from being paid for caregiving applies only to minor children, not to adult disabled children. For families caring for an adult child with younger-onset dementia, this is one of the most under-utilized paid-caregiver pathways in Pennsylvania.

Living Independence for the Elderly (LIFE), Pennsylvania's PACE

Pennsylvania's name for the federal Programs of All-Inclusive Care for the Elderly (PACE) is LIFE, Living Independence for the Elderly. As of late 2025, Pennsylvania had 8,446 LIFE participants, the third-highest PACE enrollment in the country. Major LIFE providers include LIFE Pittsburgh, Trinity Health PACE, Mercy LIFE Pennsylvania (Philadelphia and suburbs), Trinity Health PACE, LIFE St. Mary (Bucks County), LIFE-NWPA (Erie/Crawford), LIFE-Lehigh Valley (Allentown), and LIFE Geisinger (Danville/Scranton).

LIFE eligibility:

• Age 55+.
• Meets NFCE Level of Care.
• Lives in a LIFE service area.
• Can live safely in the community with LIFE services.

LIFE is a fully integrated model, the LIFE provider takes capitated payment from Medicare and Medicaid, and in exchange delivers all primary care, specialty care, prescription drugs, transportation, adult day services, home care, and 24/7 clinical access. The adult-day component is the dementia-supportive backbone, most LIFE participants attend day program multiple days a week, providing predictable caregiver respite and consistent socialization for the person with dementia.

Two important constraints: a LIFE participant cannot also enroll in CHC (LIFE is a substitute for CHC, not an addition), and a LIFE participant cannot enroll in CMS GUIDE Model (CMS rules prohibit dual GUIDE-LIFE enrollment).

Nursing Facility Medicaid, when home and assisted living no longer fit

When a person's care needs exceed what HCBS can deliver, typically because of severe behavioral symptoms, advanced incontinence and immobility, around-the-clock supervision needs that overwhelm family or paid caregivers, or skilled-nursing requirements, Pennsylvania Nursing Facility Medicaid under 55 Pa. Code Ch. 1187 is the institutional pathway. CHC participants who transition from HCBS to nursing facility remain enrolled in their CHC MCO; the financial eligibility numbers above (income, assets, look-back, penalty divisor) apply identically.

Pennsylvania nursing facility costs in 2025 averaged approximately $10,768/month for semi-private and $11,558/month for private rooms, roughly $129,200 to $138,700 per year before Medicaid coverage. Without Medicaid, these costs deplete most family savings within 18 to 30 months of placement. Personal Care Agreements, Medicaid Asset Protection Trusts, and proper use of the spousal protections under federal Medicaid law can preserve significant assets when planned at least 60 months before the look-back begins. We discuss this in detail in the Financial Planning section below.

Pennsylvania assisted living and personal care for dementia

Pennsylvania is one of the few states with two parallel licensure tracks for non-nursing-facility congregate care:

• 55 Pa. Code Ch. 2600 governs Personal Care Homes (PCH), Pennsylvania's original framework. Approximately 1,200+ licensed PCHs statewide.
• 55 Pa. Code Ch. 2800 governs Assisted Living Residences (ALR), the newer post-Act 56 of 2007 framework that allows aging in place with higher-acuity services. Approximately 75–100 licensed ALRs statewide.

The practical difference: ALRs can support residents needing skilled-nursing services through home-health contracts, while PCHs must transfer residents whose care needs exceed PCH scope.

The Special Care Designation, Pennsylvania's "memory care" tier

Both Ch. 2600 and Ch. 2800 authorize a Special Care Designation for facilities (or distinct units within a facility) that serve residents with severe cognitive impairments, operationalized as the "secure care units" (SCUs) or memory-care wings common across Pennsylvania. Our Pennsylvania memory care guide breaks down how the PCH SCU, ALR SCU, and nursing facility dementia unit differ on staffing, cost, and Medicaid coverage.

Special Care Designation requires:

• Written cognitive pre-admission screening in collaboration with a physician or geriatric assessment team.
• Indoor and outdoor exercise space within or adjacent to the SCU.
• No more than two residents per living unit, regardless of unit size.
• Specific staff training (see below).
• Physical-plant requirements: locked egress with delayed-egress hardware compliant with NFPA Life Safety Code; secure outdoor courtyards; wandering-prevention electronic monitoring; bed sensors per resident assessment.

A note on terminology: Pennsylvania does not confer a statutorily-defined "Dementia Care Specialist" credential on individual staff members. Some private credentialing bodies (the National Council of Certified Dementia Practitioners' CDP and CDCM credentials, for example) market themselves to Pennsylvania facilities, and individual facilities may choose to certify their staff. This is voluntary, not state-mandated.

Dementia training mandates, the Act 56 of 2007 baseline

Both Ch. 2600 and Ch. 2800 require dementia-specific training for direct-care staff:

• Assisted Living Residences (Ch. 2800): at least 4 hours of dementia-specific training within 30 days of hire and at least 2 hours of annual dementia-specific training thereafter.
• Personal Care Homes (Ch. 2600): 6 hours of annual dementia-specific training in addition to the 12 hours of annual general training required.

These training requirements were direct outcomes of Act 56 of 2007, which established Assisted Living as a separate licensed category and updated PCH dementia training. They are minimums, many Pennsylvania memory-care facilities exceed them substantially, and that is one of the questions worth asking on a tour.

Pennsylvania memory-care costs in 2026

Average statewide assisted-living rates are approximately $5,550/month based on 2024 Genworth/CareScout data. Assisted living with a memory-care add-on typically adds $1,000 to $2,500/month, putting Pennsylvania memory-care monthly costs at roughly $6,500 to $8,000/month, or $78,000 to $96,000/year. The 2025 CareScout national memory-care median was $7,908/month; Pennsylvania historically tracks slightly above the national median.

Few families pay for memory care entirely from current income. Pathways that help:

• Personal Care Homes that accept Supplemental Security Income (SSI), Pennsylvania administers a state-funded SSI supplement for eligible PCH residents through the State Supplementary Payment (SSP) program.
• Long-Term Care Insurance, particularly Pennsylvania Long-Term Care Partnership policies (see below), pays for dementia care including memory-care assisted living.
• VA Aid & Attendance for veterans and surviving spouses.
• Private long-term-care annuities and Medicaid Asset Protection Trusts for families with sufficient lead time.

Ombudsman protection for residents

The Pennsylvania State Long-Term Care Ombudsman (within PDA) and the 52 county-level AAA ombudsmen investigate complaints about dementia-resident care in PCH, ALR, and nursing facility settings. The PEER (Pennsylvania Empowered Expert Resident) project trains long-term-care residents themselves to advocate for one another. To file an ombudsman complaint, call your local AAA or the State Ombudsman line via PA Link at 1-800-753-8827.

Pennsylvania dementia helplines, behavioral-health crisis, and 24/7 access

Pennsylvania dementia caregivers in 2026 have seven distinct phone numbers that matter, and choosing the right one in the right moment makes a significant difference:

When 988 is the right call

988 is appropriate for behavioral-health crisis, suicidal ideation, severe agitation with self-harm risk, or severe psychiatric symptoms. The 988 counselor can dispatch a county mobile crisis team where one is available, can de-escalate, and can connect callers to follow-on supports. For wandering, falls, or a medical emergency, the right call is 911. For medication-related agitation or other Behavioral and Psychological Symptoms of Dementia (BPSD) that is not crisis-level, the right call is the GUIDE 24/7 line (if enrolled), the patient's geriatrician or memory clinic, or the Alzheimer's Association 24/7 Helpline.

Pennsylvania mobile crisis architecture

Pennsylvania's 988 and mobile-crisis architecture is county-based, governed by 55 Pa. Code Ch. 5100 (Mental Health Procedures) and funded through county MH/IDD programs and bipartisan budget allocations (the FY 2024–25 budget included approximately $20 million for county mental-health programs and $5 million for crisis stabilization walk-in centers). The flagship Harrisburg Behavioral Health Crisis Center opened with that budget funding. The federal SAMHSA framework, someone to call (988), someone to come (mobile crisis team), somewhere to go (crisis stabilization unit), is the statewide reference.

For dual-eligibles and Medicaid-enrolled patients, the Pennsylvania Behavioral HealthChoices BH-MCOs (Community Care Behavioral Health, Magellan Behavioral Health of Pennsylvania, PerformCare, and CBH-Philadelphia) cover mobile crisis intervention as a Medicaid benefit.

The Pennsylvania Behavioral Health and Aging Coalition (PABHAC)

For caregivers and providers seeking systemic resources around BPSD management and older-adult mental health, the Pennsylvania Behavioral Health and Aging Coalition (PABHAC) at pafamiliesinc.org is the statewide stakeholder coalition. Pennsylvania does not currently host a state-designated Older Adult Behavioral Health Center of Excellence, Oregon's OCEBHA, established in 2024, remains the country's first and only such center as of 2026, but PABHAC and OMHSAS-funded older-adult initiatives carry the closest analog.

Geriatric inpatient psychiatry

For dementia patients with severe BPSD requiring inpatient psychiatric admission, Pennsylvania's specialized geriatric-psychiatry units include UPMC Western Psychiatric Hospital (Pittsburgh), Penn Medicine's Princeton House (Princeton/Bucks), Belmont Behavioral Hospital (Philadelphia), Geisinger Marworth (Waverly), and Penn State Health Hershey Medical Center. Pennsylvania's geriatric-psychiatry bed inventory has been a chronic shortage; if your family member needs inpatient admission, expect the GUIDE care navigator (if enrolled), the memory clinic social worker, or the AHN/UPMC/Penn ED-psychiatric liaison to drive the placement search.

Pennsylvania dementia legal protection, the changes you need to know

The legal architecture around dementia decision-making in Pennsylvania changed substantially in the last three years. Two pieces of legislation rewrote the guardianship regime, and one long-pending bill is still moving on advance directives.

Act 61 of 2023 and Act 39 of 2025, guardianship reform

Pennsylvania guardianship is governed by 20 Pa. C.S. Ch. 55 (Incapacitated Persons), with procedural rules in 231 Pa. Code Ch. 14 (Orphans' Court). For decades Pennsylvania was one of approximately eight states that did not automatically appoint counsel for the alleged incapacitated person, meaning that someone with mild or moderate dementia could be the subject of a guardianship proceeding without legal representation.

That changed with Act 61 of 2023 (Senate Bill 506), signed in 2023 and effective June 11, 2024. Act 61 made four core changes:

1. Mandatory appointment of legal counsel for the alleged incapacitated person in all guardianship petitions.
2. Mandatory consideration of less-restrictive alternatives, including durable Power of Attorney, advance directives, supported decision-making, special-needs trusts, and representative payeeship, before guardianship is granted. This is the most consequential change for dementia families: a properly executed Health Care POA and Financial POA, executed before incapacity onset, can usually avoid guardianship entirely.
3. Certification requirements for court-appointed guardians, particularly professional guardians who serve three or more wards.
4. Mandatory review hearings within one year of appointment, plus an expedited 30-day-filing-to-60-day-hearing procedure for petitions to terminate or modify guardianship.

Act 39 of 2025 (signed October 27, 2025) further amended Ch. 55, among other provisions, adjusting the burden of proof to clear-and-convincing for continuation or expansion of guardianship.

What this means for dementia families: if guardianship is being considered for someone in your family, the 2026 Pennsylvania regime is fundamentally different from the regime of 24 months ago. The court will require a documented assessment of less-restrictive alternatives. If you have not already executed durable Power of Attorney documents while your family member has legal capacity, do so now.

Standby Guardianship, 23 Pa. C.S. Ch. 56

The Standby Guardianship Act, codified at 23 Pa. C.S. §§ 5601–5616, lets a custodial parent, legal guardian, or legal custodian designate a standby guardian whose authority commences automatically upon a defined "triggering event", death, incapacity, debilitation, or administrative removal/deportation. Court approval is optional but recommended for documentation strength.

For dementia families, Standby Guardianship is most directly relevant when a person with dementia is also serving as the legal guardian or custodial parent of a minor child or grandchild, for example, a grandmother with mild dementia raising a grandchild. Standby Guardianship lets her name a successor whose authority commences automatically if her dementia progresses to incapacity. (The citation is 23 Pa. C.S. Ch. 56, not 23 Pa. C.S. § 5322, § 5322 deals with personal jurisdiction in domestic-relations cases, an unrelated matter.)

Advance directives, 20 Pa. C.S. Ch. 54

Pennsylvania's advance-directive framework lives in 20 Pa. C.S. Ch. 54 (Health Care):

• Living Will (Subchapter B), a declaration authorizing limitation of interventions in end-stage condition or permanent unconsciousness.
• Health Care Power of Attorney (Subchapter C), designation of a healthcare agent. The single most important document for a Pennsylvania dementia family.
• Health Care Representative (Subchapter D), the default decision-maker hierarchy when no agent is designated.
• Out-of-Hospital DNR, within Chapter 54 post-Act 169 of 2006.

A separate chapter, 20 Pa. C.S. Ch. 58 (Mental Health Care), authorizes a Mental Health Advance Directive, a document specifying mental-health treatment preferences (commitment, medication, ECT) in advance. Critically applicable for dementia patients who anticipate future psychiatric crisis or severe BPSD requiring inpatient admission.

POLST, Pennsylvania Orders for Life-Sustaining Treatment, remains a clinical-coalition product under DOH guidance as of May 2026; legislation has been introduced in the 2025–26 session to create a formal Subchapter F of Chapter 54 (Pennsylvania Order for Life Sustaining Treatment Act), but enactment has not been confirmed. The current POLST form is available at papolst.org.

Financial Power of Attorney, 20 Pa. C.S. Ch. 56

The Financial Power of Attorney statute at 20 Pa. C.S. §§ 5601–5612 (revised most recently by Act 95 of 2014) requires:

• Two witnesses plus notarization for execution.
• Specific notice language at the top of the document.
• Explicit grant of "hot powers", creating or amending trusts, gifting, changing beneficiary designations, delegating authority, changing rights of survivorship, waiving marital-property rights, and exercising fiduciary powers, none of which the agent can exercise unless the principal explicitly grants them in the document.

Capacity to execute a POA is required at the time of execution. A dementia patient with progressing disease should execute or update a Financial POA as early as possible in the disease course, ideally during the mild cognitive impairment stage. Once capacity is lost, only guardianship is available.

Driving, 75 Pa. C.S. § 1518 and PennDOT Medical Reporting

Pennsylvania's driver-medical-reporting statute, 75 Pa. C.S. § 1518, requires physicians, podiatrists, chiropractors, physician assistants, certified registered nurse practitioners, and certain other authorized providers to report within 10 days any patient age 15 or older diagnosed with a condition that could impair safe driving, and dementia is on the reportable conditions list.

The PennDOT Medical Advisory Board, a 13-member body including 8 physicians appointed by the Transportation Secretary, formulates the physical and mental criteria for licensing under 67 Pa. Code Ch. 83. Once a report is filed, PennDOT may require a medical exam, vision test, knowledge test, or road test. License recall is possible.

For dementia families, this matters for two reasons. First, the conversation about driving is one of the most emotionally fraught in the dementia journey. Second, the law often arrives there before the family does, a primary-care or memory-clinic provider may have already filed the § 1518 report. Penn Memory Center, UPMC ADRC, and Geisinger (with its Wilkes-Barre driving simulator) are common evaluation sites for fitness-to-drive assessments. Working with a memory program that handles the driving question proactively saves families months of conflict.

Pennsylvania dementia financial planning, the 2026 numbers and the playbook

Most Pennsylvania dementia families face a financial reality that no family is fully prepared for: the lifetime cost of dementia care in Pennsylvania consistently lands in the $300,000 to $400,000 range per family, depending on home-care duration, assisted-living memory care, nursing facility months, and what insurance and Medicaid cover. There is no escaping the math; there is, however, a playbook.

The 2026 Pennsylvania Medicaid LTC numbers

For long-term-care Medicaid eligibility, including CHC, OBRA Waiver, and nursing-facility Medicaid, the 2026 figures are:

• Single applicant income cap: $2,982/month (300% of 2026 SSI Federal Benefit Rate $994).
• Single applicant asset cap: $2,000 base + $6,000 disregard = $8,000 effective when income is at or below the cap.
• Community Spouse Resource Allowance (CSRA) maximum: $162,660 in 2026; minimum $32,532. Pennsylvania is a 50% state, the community spouse keeps up to half of countable assets, capped at $162,660.
• Minimum Monthly Maintenance Needs Allowance (MMMNA): $2,644/month (effective July 1, 2025 through June 30, 2026).
• Maximum Monthly Maintenance Needs Allowance: $4,066.50/month (effective January 1, 2026).
• Look-back: 60 months for both nursing-facility Medicaid and HCBS waivers.
• 2026 penalty divisor: $421.20/day ($12,811.50/month).

Spousal Refusal, yes, Pennsylvania recognizes it

Pennsylvania does recognize spousal refusal as a Medicaid planning tool. The community spouse can formally refuse to contribute their excess assets or income to the institutionalized spouse's care. PA DHS may pursue post-Medicaid reimbursement under federal "right-to-recovery" rules, but Pennsylvania historically has not aggressively pursued spousal-refusal recoveries. Spousal refusal is most useful when the community spouse has substantial income or assets above CSRA and MMMNA caps. This is a strategy to discuss with a Pennsylvania elder-law attorney, not to attempt unrepresented.

Personal Care Agreements, Medicaid plus inheritance-tax planning

A Personal Care Agreement (PCA) is a written contract between a person with dementia (or their POA agent or guardian) and a family caregiver, memorializing wages paid for services rendered. Properly executed, a PCA can serve two purposes simultaneously:

1. Medicaid look-back compliance. Wages paid under a PCA are not "transfers for less than fair market value", they are compensation for services rendered. As long as the wages are at fair market rate, services are actually performed, and documentation is contemporaneous, the wages do not trigger penalty under the 60-month look-back. Without a PCA, the same payments may be classified as gifts and create months of LTSS ineligibility at the 2026 penalty divisor of $421.20/day.

2. Inheritance-tax conversion. Pennsylvania's inheritance tax is 0% to a surviving spouse, 4.5% to lineal descendants (children and grandchildren), 12% to siblings, and 15% to all other heirs (including non-relative caregivers and fictive kin). For a non-relative caregiver, every dollar passing as inheritance loses 15 cents to inheritance tax. The same dollar passing as wages during the principal's life is subject to ordinary income tax (and Pennsylvania's flat 3.07% Personal Income Tax), but is not subject to inheritance tax.

A PCA must be at fair-market wage, for services actually rendered, contemporaneously documented, and ideally executed before the 60-month look-back begins. A Pennsylvania elder-law attorney can structure the PCA properly; the cost is modest relative to the value protected.

Pennsylvania Long-Term Care Partnership Program, Act 40 of 2007

Pennsylvania's Long-Term Care Partnership Program, signed by Governor Rendell on July 17, 2007 as Act 40 of 2007 under the federal Deficit Reduction Act of 2005 authority, provides a dollar-for-dollar asset disregard for owners of Partnership-qualified long-term-care insurance. A Partnership policy that pays out, for example, $200,000 in benefits lets the policyholder protect $200,000 of otherwise-countable assets from Medicaid spend-down, and, critically, from estate recovery after death.

The Partnership reciprocates with most other states. Dementia coverage is included (LTC insurance covers cognitive impairment). For families considering long-term-care insurance, Partnership-qualified is the right kind to buy in Pennsylvania.

Reverse mortgages (HECM) for dementia families

A federally insured HECM (Home Equity Conversion Mortgage) can convert home equity into income or a credit line for Pennsylvania homeowners 62 and older. Important caveat for dementia families: HUD requires the borrower(s) to have legal capacity at closing. A spouse with mild MCI may still qualify; advanced dementia generally precludes a new HECM origination. Pre-existing HECMs continue, but if the borrower moves to a nursing facility for 12 or more consecutive months, the loan becomes due (the HECM "displacement clause" with 12-month tolerance for short stays).

Veterans' dementia financial pathways, 2026 numbers

For Pennsylvania veterans, surviving spouses, and their families, the VA Aid & Attendance pension is one of the most underutilized dementia-financing pathways. Aid & Attendance is a tier of the VA pension paid to wartime veterans (and their surviving spouses) who require assistance with activities of daily living or are housebound. Cognitive impairment qualifies.

The 2026 Aid & Attendance Maximum Annual Pension Rates (effective December 1, 2025 through November 30, 2026):

• Veteran, no dependents: $2,422/month ($29,065/year).
• Veteran with spouse or dependent: $2,871/month ($34,454/year).
• Surviving spouse, no dependents: $1,556/month ($18,679/year).
• Surviving spouse with dependent: $1,856/month ($22,282/year).

The net-worth limit (December 1, 2025 through November 30, 2026) is $163,699. Unreimbursed Medical Expense (UME) deductions reduce countable income, but only the portion above 5% of MAPR is deductible.

Veterans' dementia care also includes Veteran Directed Care (VDC), which lets the veteran hire family caregivers (including spouses, in narrow circumstances), and the Program of Comprehensive Assistance for Family Caregivers (PCAFC), which provides a monthly caregiver stipend, health coverage for the caregiver, mental health services, and respite, for veterans whose service-connected conditions meet PCAFC's tiered eligibility, including dementia-related functional impairment. Call the VA Caregiver Support Line at 1-855-260-3274 to begin either pathway.

Pennsylvania dementia caregiver education and evidence-based programs

Dementia caregiving is a learned skill. The most-burdened caregivers are usually those who have never been taught how to handle BPSD, how to communicate when language fails, how to manage their own emotional and physical health under the load. Pennsylvania has a meaningful set of evidence-based caregiver education programs in 2026.

• Powerful Tools for Caregivers (PTC), a 6-week class delivered through multiple Pennsylvania AAAs under the Family Caregiver Support Program. Focuses on caregiver self-care, stress management, and communication skills.
• REACH II / REACH-VA, Resources for Enhancing Alzheimer's Caregiver Health II, a 6-month manualized intervention. The VA Pittsburgh, Coatesville, and Wilkes-Barre VAMC programs are the dominant Pennsylvania REACH delivery channels via the VA Caregiver Support Program. Civilian PA AAA delivery is more limited.
• Tailored Activities Program (TAP), an 8-session, 4-month home-based occupational-therapy intervention developed by Laura Gitlin and colleagues at Thomas Jefferson University in Philadelphia, now disseminated through Drexel Online. Reduces neuropsychiatric symptoms and caregiver burden. Pennsylvania delivery depends on the availability of TAP-trained occupational therapists.
• Healthy IDEAS, late-life depression intervention delivered across multiple PA AAAs under PDA grant funding. Addresses caregiver depression, which often co-occurs with high caregiver burden.
• Savvy Caregiver, a 6-session dementia-caregiver education program developed at the University of Minnesota; Pennsylvania delivery is selective, neither universal nor absent.
• PA CareKit, Pennsylvania's flagship caregiver portal at pa.gov/agencies/aging/pa-carekit, launched May 28, 2025. As of late 2025/early 2026, PDA reports more than 315,000 unique visits and approximately 6,600 quiz completions. Printed materials are distributed at Pennsylvania libraries, all 52 AAAs, Senior Community Centers, and Adult Day Centers. The dementia content includes a Caregiver Quiz, dementia-specific tip sheets, links to local AAA and Alzheimer's Association resources, and respite information. PDA received an Administration for Community Living grant to evaluate CareKit's effectiveness.

The single highest-yield early step for most Pennsylvania dementia caregivers is calling the Alzheimer's Association 24/7 Helpline at 1-800-272-3900 and asking specifically about a free care consultation, dementia-education classes, and support groups in your area. Both Pennsylvania chapters offer these at no cost.

The Alzheimer's Association in Pennsylvania, two chapters, not three

A point of clarification frequently muddled in older guides: the Alzheimer's Association has two Pennsylvania chapters, not three.

• The Greater Pennsylvania Chapter (alz.org/pa) serves 59 of Pennsylvania's 67 counties, including all of western, central, and northeastern Pennsylvania, with offices in Harrisburg and Pittsburgh.
• The Southeastern Pennsylvania Chapter (alz.org/delval, renamed from "Delaware Valley Chapter" in January 2026 when Delaware split into a separate chapter) serves the 8 southeastern Pennsylvania counties: Berks, Bucks, Chester, Delaware, Lehigh, Montgomery, Northampton, and Philadelphia.

Both chapters share the national 24/7 Helpline at 1-800-272-3900 (free, confidential, 200+ languages) and deliver:

• Free care consultations by phone or in person.
• Support groups (in-person and virtual; chapter-specific calendars).
• Education series, Living with Alzheimer's (early-stage, middle-stage, late-stage), Dementia Conversations (legal/financial planning, driving, end-of-life), Healthy Living for Brain & Body, Effective Communication Strategies, Understanding Alzheimer's and Dementia.
• TrialMatch clinical-trial matching service.
• Walk to End Alzheimer's fundraising events held statewide each fall.
• Pennsylvania-specific advocacy through the Alzheimer's Impact Movement (AIM-PA) coalition, both chapters worked on Act 111 of 2024.

The MedicAlert + Alzheimer's Association Safe Return wandering-protection ID program has been operated by the MedicAlert Foundation since 2010, the Alzheimer's Association exited operational ownership at that time. The program continues under MedicAlert as Wandering Support, and the Alzheimer's Association still refers families to it.

Three other dementia-specific organizations matter for Pennsylvania families:

• Association for Frontotemporal Degeneration (AFTD), headquartered in Radnor, PA, with a national helpline at 866-507-7222. Pennsylvania families dealing with frontotemporal dementia should start here.
• Lewy Body Dementia Association (LBDA) at lbda.org, for families dealing with Lewy body dementia, with volunteer-led support groups in Pennsylvania.
• CurePSP at psp.org, for families dealing with progressive supranuclear palsy, corticobasal degeneration, or multiple system atrophy. Helpline 1-800-457-4777.

The first 30 days, what to actually do

If you are at the beginning of this journey, here is the playbook for the first 30 days:

Days 1–7

1. Call the Alzheimer's Association 24/7 Helpline at 1-800-272-3900. Schedule a free care consultation. Ask specifically for the closest in-person and virtual support groups and for the next dementia-education class in your area.

2. Schedule a comprehensive memory evaluation at one of Pennsylvania's academic memory programs or with a board-certified geriatrician or cognitive neurologist. If the diagnosis has not been formalized, this is the foundation everything else rests on.

3. Call PA Link at 1-800-753-8827 to be screened for the Family Caregiver Support Program. Ask for the FCSP intake form, the contact for your county AAA's caregiver-support coordinator, and information about local respite providers.

Days 8–21

4. If your family member has Original Medicare, call the closest CMS GUIDE Model participant (Penn Memory Center, UPMC, Abramson, VNA Health System, VNA Central PA, or LECOM Medical Associates of Erie) to ask about enrollment.

5. Contact a Pennsylvania elder-law attorney to begin the conversations about Health Care Power of Attorney, Financial Power of Attorney, advance directives (Living Will, Mental Health Advance Directive, POLST), and, depending on your circumstances, Medicaid asset-protection planning, Personal Care Agreements, and trusts. The Pennsylvania Bar Association's Elder Law Section maintains a referral list.

6. If your family member is a wartime veteran or surviving spouse, call the VA Caregiver Support Line at 1-855-260-3274 to begin the Aid & Attendance, Veteran Directed Care, or PCAFC application process.

Days 22–30

7. Begin the Functional Eligibility Determination conversation with PA Link or your county AAA if Medicaid LTSS is on the horizon. The FED is the gateway to CHC and other HCBS programs; understanding the timeline helps with planning.

8. Visit at least three memory-care or assisted-living-with-memory-care residences in your area, even if placement is not immediate. Knowing what you would choose if you needed to choose tomorrow is one of the most stress-relieving acts a Pennsylvania dementia family can take. Bring questions about Special Care Designation, dementia training hours, staff-to-resident ratios, secure-unit egress, behavioral-symptom protocols, and rate transparency.

9. Build the helpline list and post it on the refrigerator. 988. 1-800-272-3900. 1-800-753-8827. 1-855-260-3274. Penn Memory Center 215-662-7810 or UPMC 412-692-4200 if GUIDE-enrolled. Your family member's primary care number. Your elder-law attorney. Your AAA caregiver-support coordinator. The night you need it, you will not have time to look any of these up.

10. Take care of yourself. This is not a postscript, it is the most important sentence in this guide. Pennsylvania dementia caregivers in 2026 are providing 34 hours per week of unpaid care on top of jobs, marriages, parenting, and chronic conditions of their own. Sleep matters. Exercise matters. Friends matter. Therapy matters. The dementia journey will be measured in years, sometimes a decade or more, and your family member needs you to still be standing at the end of it.

A note on what is changing

Pennsylvania's dementia landscape is in motion. In the months ahead, watch for:

• The refreshed Pennsylvania State Plan for ADRD under Act 111 of 2024, expected during 2026.
• Additional CMS GUIDE Model participants if CMS opens a third cohort.
• Pennsylvania POLST statutory codification if the proposed Subchapter F of Chapter 54 advances in the 2025–26 session.
• The HB 200 Family Care Act, which passed the Pennsylvania House 107–92 on March 25, 2026 and is awaiting Senate action, paid family and medical leave would be transformative for dementia caregivers.
• The 2026 ADRD Office Director appointment when PDA names one publicly.
• Aging Our Way, PA Year 2 Implementation Report, due in 2026.

Brevy maintains this guide on a rolling basis. If you find a number, program, or contact in this guide that has changed, please let us know, we update Pennsylvania content first because the Pennsylvania families reading our guides cannot afford to act on an outdated number.

Learn More

• Understanding the Stages of Dementia: What to Expect
• Managing Dementia Behaviors: Agitation, Aggression, and Sundowning
• Communicating With Someone Who Has Dementia
• Daily Care for Someone With Dementia: Bathing, Dressing, and Eating
• Dementia, Wandering, and Home Safety
• Late-Stage and End-of-Life Dementia Care
• How to get paid as a Pennsylvania family caregiver, the complete guide to Services My Way, OBRA Waiver, FCSP, PA OPTIONS, and VA Veteran Directed Care for Pennsylvania caregivers paid for the work they are already doing.
• Pennsylvania respite-care guide, the eight Pennsylvania respite rails, including how to claim the GUIDE $2,500 respite benefit, how PA Medicaid hospice respite differs from Medicare, and how to stack respite across programs.
• Pennsylvania caregiver programs, a map of the Pennsylvania programs that fund and support family caregivers, from FCSP to Community HealthChoices.
• Pennsylvania caregiver pillar landing, every Pennsylvania caregiver guide we publish, organized by need.

About this guide

This guide was produced by the Brevy newsroom for Pennsylvania dementia families. It synthesizes federal statute and regulation, Pennsylvania statute and Pennsylvania Code, Pennsylvania Department of Aging and Department of Human Services published documents, the Alzheimer's Association 2026 Alzheimer's Disease Facts and Figures, NIA-designated Alzheimer's Disease Research Center materials, peer-reviewed dementia caregiving research, CMS Innovation Center documentation for the GUIDE Model, and direct review of Pennsylvania assisted-living and memory-care licensure data.

We re-verify Pennsylvania figures at least every 90 days and after every major regulatory or legislative change.

Brevy is an eldercare company. We do not accept payment from facilities, providers, insurers, attorneys, or any party whose services we describe. Our newsroom exists for one purpose: to give Pennsylvania families a single trustworthy source on dementia caregiving in 2026. Find more guides for your family at brevy.com.

The information on Brevy.com is for educational purposes only and is not a substitute for professional legal, financial, or medical advice. Rules vary by state and program and change frequently. Always verify with the relevant agency or a qualified professional. Brevy is not a law firm, financial advisor, or healthcare provider.