Dementia Care in Kentucky: Help, Respite, and Who Pays

Dementia care in Kentucky often falls to family, and you do not have to carry it alone or pay for all of it yourself. The Alzheimer's Association counts about 81,000 Kentuckians age 65 and older living with Alzheimer's, a figure its 2026 Kentucky fact sheet labels as of 2020.1

Dementia caregiving is its own kind of hard: the long arc, the behavioral changes, the safety worries, the grief that starts before any loss. This guide maps the Kentucky-specific help available in 2026, from the free 24/7 helpline to Medicaid respite to the programs that may pay you for the care you already provide.

You do not have to navigate this alone, and you do not have to fund all of it from your savings.

In This Guide

• Kentucky Dementia Caregiving, by the Numbers
• Where to Start With Dementia Care in Kentucky
• Who to Call in Kentucky
• Keeping a Loved One With Dementia Safe
• Who Pays for Dementia Care in Kentucky
• Respite for Dementia Caregivers
• Frequently Asked Questions
• Learn More

Kentucky Dementia Caregiving, by the Numbers

The Alzheimer's Association reports that about 81,000 Kentucky residents age 65 and older are living with Alzheimer's disease, a count its 2026 Kentucky fact sheet labels as of 2020. The Association also counts about 190,000 family caregivers supporting people living with dementia in Kentucky, who provide an estimated 323 million hours of unpaid care, valued at roughly $6.7 billion.1

If the work feels overwhelming, that is not a personal failing. It is the reality of a condition that can demand a great deal, for a long time.

Where to Start With Dementia Care in Kentucky

When a diagnosis lands, or when caregiving starts to outpace what you can manage alone, two contacts open most doors in Kentucky:

1. The Alzheimer's Association 24/7 Helpline: 1-800-272-3900. This free service is open to people living with dementia, caregivers, families, and the public. A live person can provide information, local resources, crisis assistance, and emotional support, in your preferred language through bilingual staff or an interpreter service covering more than 200 languages. Conversations are confidential, with one limit the Association states: its Care Consultants are mandated reporters, required by law to report abuse or neglect to state authorities.2
2. Kentucky's Department for Aging and Independent Living (DAIL). For information about resources and supports in your community, DAIL gives a toll-free line, 1-877-925-0037; it works in partnership with Kentucky's Area Agencies on Aging and Independent Living. You can also reach the federal Eldercare Locator, a public service of the Administration for Community Living, at 1-800-677-1116.2

Who to Call in Kentucky

The Department for Aging and Independent Living, within the Cabinet for Health and Family Services, oversees statewide programs and services for Kentucky elders and individuals with disabilities. It works in partnership with Kentucky's Area Agencies on Aging and Independent Living, community mental health centers, Centers for Independent Living, and other community partners. Its programs include Caregiver Support Services and an Office of Dementia Services; call 1-877-925-0037 for information about resources and supports in your community. Through the state aging network, the federal National Family Caregiver Support Program funds information about available services, help gaining access to them, individual counseling, support groups and caregiver training, respite care, and supplemental services on a limited basis.2

Keeping a Loved One With Dementia Safe

Some of the hardest moments in dementia care are the ones where you have to take something away (the car keys, the front-door latitude, the checkbook) while your loved one can still feel the loss. For wandering and home safety, see Dementia, Wandering, and Home Safety. The Alzheimer's Association 24/7 Helpline (1-800-272-3900) can provide information, local resources, crisis assistance, and emotional support.2 On the legal side, a health care power of attorney does not give anyone power over money: a separate financial power of attorney is needed, and the person has to set it up in advance.6 Our advance directives guide explains the health care documents.

Who Pays for Dementia Care in Kentucky

No single payer covers everything dementia care demands. Most Kentucky families assemble a plan from several sources, and which ones apply depends on care needs, income, assets, and whether the person you care for is a veteran.

Kentucky Medicaid (Home and Community Based Waiver)

For Kentuckians who qualify, the Home and Community Based (HCB) waiver, part of Kentucky's 1915(c) Medicaid waiver program, provides assistance to the elderly or to adults and children with physical disabilities to help them live in the community as independently as possible. The Department for Medicaid Services and the Department for Aging and Independent Living work together to operate it. Its services include but are not limited to adult day health care, attendant care, environmental and minor home adaptation, home-delivered meals, and both non-specialized and specialized respite care.2 The federally approved description of the waiver also lists case management.3

You may qualify for HCB if you are age 65 or older and/or have a physical disability, and you meet the requirements for residence in a nursing facility defined in Kentucky regulation 907 KAR 1:022. A dementia diagnosis alone may not satisfy the first of those tests.2 You must also meet Medicaid's financial qualifications, and Kentucky applies special financial rules to the HCB program.3 For the current Kentucky income and asset thresholds and how a spouse's income and assets are treated, see Kentucky Medicaid income and asset limits and Kentucky Medicaid and nursing home care. You can apply online through kynect or in person at an Aging and Disability Resource Center or a Community Mental Health Center. There is currently a waiting list for HCB services and supports, and placement on it is determined by the date your completed application is received.2 While you wait, call DAIL at 1-877-925-0037 for information about caregiver supports in your community; respite is one of the services the National Family Caregiver Support Program funds through the state aging network.2

Getting Paid to Care for a Loved One With Dementia

Some Kentucky dementia caregivers can be paid for the care they provide. Under Kentucky's Participant Directed Services (PDS), a waiver participant, including someone on the HCB waiver, can directly hire their own providers for non-medical, non-residential waiver services rather than use a traditional agency. The participant is the employer of record who hires, trains, schedules, and terminates employees, and may choose an authorized representative if needed. PDS is a way to receive waiver services, not a way onto a waiver. A relative who is not a legally responsible individual (LRI) does not need Kentucky's LRI review, though other program conditions still apply. A spouse or court-appointed guardian of an adult is a legally responsible individual, and can be paid only for "extraordinary care," when at least one of three circumstances Kentucky lists is identified and verified, such as caregiving having reduced or eliminated the spouse's ability to keep paid employment within the previous twelve months with no other caregiver in the home able to provide care.4 For a veteran who meets all of VA's PCAFC conditions, including a VA disability rating of 70% or higher, VA can pay an approved Primary Family Caregiver a monthly stipend.5 The pathways, who can be hired, and the pay are covered in the Kentucky paid family caregiver guide.

VA Benefits (for Veterans)

If the person you care for is a veteran, two VA programs can help. The Program of Comprehensive Assistance for Family Caregivers (PCAFC) pays an approved Primary Family Caregiver a monthly stipend, which VA described as a nontaxable benefit in its 2020 proposed PCAFC rule, and a spouse can serve as that caregiver. It also provides caregiver training, counseling, and at least 30 days of respite care a year. The stipend is not a flat national figure: it starts from the federal Office of Personnel Management General Schedule (GS) grade 4, step 1, annual pay rate for the veteran's local area, divided by 12, and that monthly base is then multiplied by a factor set in 38 CFR 71.40(c)(4)(i). Which factor applies depends on how the veteran qualifies. Under the current program the factor is 0.625, or 1.00 if VA determines the veteran is unable to self-sustain in the community. For a legacy participant or legacy applicant, the categories defined in 38 CFR 71.20(b) and (c), the factor comes instead from the sum of the veteran's 2019 clinical ratings: 1.00 if that sum is 21 or higher, 0.625 if it is 13 to 20, and 0.25 if it is 1 to 12, with no self-sustain determination required on that route.5 A veteran who meets both sets of criteria is paid at whichever factor is higher, and a legacy participant's stipend cannot fall below what the caregiver was eligible for the day before October 1, 2020, for as long as the veteran remains at the address VA has on record. The legacy schedule lapses October 1, 2028. Because the base rate is tied to the veteran's locality, the dollar amount varies by where the veteran lives; the Kentucky paid family caregiver guide walks through the calculation.5 Separately, Aid and Attendance (A&A) is an increased monthly pension: a veteran or survivor who already gets a VA pension may be eligible if they meet at least one of VA's listed requirements, such as needing another person to help with daily activities like bathing, feeding, and dressing.5,7 The VA pension itself is for wartime veterans: among its tests, the veteran must have served at least 1 day of active duty during wartime.7

Veteran eligibility: VA publishes four conditions, and they are the first screen rather than the decision. The veteran must meet all four:5

• A VA disability rating, individual or combined, of 70 percent or higher.5
• Discharge from the U.S. military, or a date of medical discharge.5
• A need for at least six months of continuous, in-person personal care services.5
• Enrollment in VA health care.5

Meeting those four is necessary, not sufficient. The binding test is 38 CFR 71.20(a), which states seven requirements and requires every one of them. Four of the seven have no counterpart in the four above, and VA assesses them during the application process:5

• Participating in the program is in the veteran's best interest.5
• The personal care services the family caregiver would provide are not simultaneously and regularly provided by or through another individual or entity.5
• The veteran receives care at home, or will do so if VA designates a family caregiver.5
• The veteran receives ongoing care from a primary care team, or will do so if VA designates a family caregiver.5

The no-other-provider condition is the one most likely to surprise a family, because a household already receiving regular personal care through another program or entity can fail PCAFC on that ground alone.5

Medicare

Under Medicare Part B, if a routine or yearly "Wellness" visit turns up signs of cognitive impairment, Medicare covers a separate visit to fully assess cognitive function and build a written care plan, a service that can help diagnose dementia, including Alzheimer's disease. After the Part B deductible, you pay 20% of the Medicare-approved amount. Medicare also covers certain home health services when a person needs part-time or intermittent skilled services and is homebound, and hospice care when a hospice doctor and the person's regular doctor certify a terminal illness with a life expectancy of 6 months or less and the person accepts comfort care instead of care to cure the illness. But Medicare does not pay for long-term custodial care (ongoing, non-medical help with bathing, dressing, and using the bathroom) when that is the only care a person needs; families typically cover that out of pocket, through Medicaid if eligible, or with long-term-care insurance.8 Where it operates, the GUIDE Model, a nationwide CMS program that began July 1, 2024, adds dementia care navigation, a 24/7 support line, caregiver training, and respite. For the performance year that began July 1, 2026, CMS pays the participating provider, not the family, up to $2,625 a year in respite per eligible patient. To be in GUIDE at all, a patient must be enrolled in both Medicare Parts A and B with Medicare as primary payer, not be in Medicare Advantage or another Medicare health plan, not be in the Medicare hospice benefit, and not be a long-term nursing home resident. Beginning in the 2026 performance year, the patient must also live in a private residence or in a residential care community that CMS has approved as a partner of the participating provider, and someone living in a memory care unit cannot be enrolled. GUIDE respite is further limited to patients with moderate or severe dementia whose primary caregiver is a relative or an unpaid nonrelative, and who do not live in assisted living or another residential care community. The person must have a Medicare provider enrolled in the model.8 Ask your loved one's doctor whether they take part in GUIDE.

Respite for Dementia Caregivers

Respite is what makes the long haul survivable. In Kentucky, specialized and non-specialized respite are among the HCB waiver's services for eligible Medicaid members, alongside adult day health care, and respite care is one of the services the National Family Caregiver Support Program funds through the state aging network, which includes Kentucky's Area Agencies on Aging and Independent Living.2 For the full picture, see Respite Care in Kentucky.

Learn More

Find personalized help caring for a loved one with dementia in Kentucky 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.