What housing options and long-term care services are available for a person with Alzheimer’s disease (AD)?
Housing and support services are critical issues for persons living with AD. An individual’s needs will change significantly over the course of the illness that can span more than a decade. Upon diagnosis, an individual may be able to live at home with some modifications to their living space and daily routine along with the support of family and friends. As symptoms progress, an individual may add personal care services to assist with cooking, cleaning and laundry, as well as increased support from family and friends in order to remain safely at home. More intensive long-term care services will be needed to address continued loss of cognitive function (thinking, judgment, memory and language) and behavioral symptoms.
The services, described below, may be delivered in the home, community or residential care facility. At each decision point, it is critical to understand the wishes of the person with AD and seek their involvement to the extent possible. Conversations early in the disease are important to understand an individual’s preferences, financial considerations and long-term care options in your community.
Housing and Long-Term Care Services
- Informal support. Family and friends help support the person to continue living safely in the community. Tasks may include assistance with shopping, cooking, cleaning, personal care, transportation, paying bills and scheduling doctor’s appointments. Some families choose to live together or close by their loved one.
- In-home services. This category includes home health (wound care, injections, nutrition therapy, physical therapy and occupational therapy) and personal care services (assistance with personal care, mobility, meal preparation, light housekeeping and companionship).
- Home safety assessment and modifications. A home assessment can identify changes to address safety concerns, reduce the risk of falls and limit the potential for wandering.
- Retirement housing/Independent Living/Senior Living. This housing option is for individuals who can live independently. A person with mild cognitive impairment (MCI) may be able to reside in this setting.
- Continuum of care retirement communities. Multiple levels of care are provided on one campus. Housing options usually include independent living, assisted living, dementia care and skilled nursing care.
- Adult day care. A group program, generally operating during business hours, offering care and support services (meals, social activities, personal care assistance and health-related services) to individuals who need assistance and supervision.
- Assisted living facility. Housing option offering some support services such as assistance with meals, laundry and medication reminders along with recreational activities and transportation. Residents usually live in their own apartments. Some facilities do not accept individuals living with dementia or may cancel the lease of an individual once diagnosed with the illness.
- Group or Residential Care Homes. These homes, often located in residential neighborhoods, offer services to a small group of residents including a single or double room, personal care assistance, housekeeping, meals and activities.
- Alzheimer’s special care units/memory care units. Specialized care and 24-hour supervision for persons with AD and other forms of dementia. Facilities may be free-standing or part of a skilled nursing home. Alzheimer’s/memory care is usually provided in a secure, easy to navigate environment by staff trained to care for persons with dementia.
- Skilled Nursing Care/Nursing Home. Facility that provides 24/7 medical care, treatment and therapies along with personal care assistance, nutrition and activities.
- Hospice. Palliative care and support services for a person with a terminal illness and a life expectancy of less than six months. The goal of hospice is to provide comfort care along with relief of pain and other symptoms. Hospice services may be delivered in the home or a facility.
Facilities and programs that provide dementia care vary greatly across all care settings and from facility to facility. Depending on the type of service, it may be helpful to learn more about:
- Services and programs
- Training in Alzheimer’s care
- Facility and environment
- Safety and security
- Activities and social engagement
Check state and local licensing agencies for information about specific facilities/programs. In some communities, Eldercare Locator, can be helpful in searching for housing options and long-term care services.
Paying for care
The costs related to housing and long-term care services vary significantly by type, level of care and geographic location. Some services are covered under Medicare, Medigap or health insurance. Individuals may qualify for income-based programs such as Medicaid and other government support programs. Other options to pay for these services include long-term care insurance, annuities, life insurance policies, personal income and savings. Veterans living with dementia may be eligible to receive a range of services such as homemaker and home health aide, adult day healthcare, nursing home and hospice care. The U.S. Department of Health and Human Services’ website, Longtermcare.gov, is a resource for information about costs and ways to pay for housing options and long-term care services.
Respite is defined as a break from the responsibilities of caregiving. Research has demonstrated that it is important for caregivers caring for loved ones with AD to take a break. For each caregiver, the concept of respite is different. Some choose to visit with friends, go to the doctor, run errands or attend a support group. Respite provides the opportunity for caregivers to take care of themselves while ensuring their loved one is in a safe environment. There are various options for respite including:
- Informal respite provided by family, friends and volunteers
- In-home services
- Adult day care
- Short-term stay at a residential facility (assisted living, group home or Alzheimer’s special care unit)
How to decide when different housing options or long-term care services are needed?
An individual with AD will benefit from various long-term care services and living arrangements based on the course of their illness and specific symptoms. There are some general questions that can help guide the decision-making process at transition points along the way:
- What are the preferences of the individual with Alzheimer’s disease? Conversations about care early in the disease can help guide decisions when an individual has reduced capacity to understand choices or the need for change.
- Is the personal safety of your loved one becoming an issue or concern?
- Is he/she able to:
- Manage activities of daily living (walking, eating, bathing, grooming, dressing, toileting)?
- Carry out instrumental activities of daily living (shopping, meal preparation, house cleaning, finances, medication management and driving or other forms of transportation)
- Operate household appliances such as the stove/oven, washing machine or microwave?
- Keep safe from household hazards?
- Is there concern that your loved one will wander away from home?
- Has your loved one fallen in the past or is at risk of falling?
- What is the health status of your loved one?
- Has his/her health status recently changed?
- Does your loved one have other physical or mental health conditions in addition to Alzheimer’s disease?
- Is his/her medication schedule complicated, requiring multiple drugs at various times each day?
- Communication and Behaviors
- Has your loved one’s communication skills changed?
- What is the impact of changes in communication skills?
- Is he/she experiencing disease related behaviors such as agitation, confusion or aggression, hallucinations or anxiety?
- Are there times of the day that are more challenging?
- Is he/she sleeping at night?
- As a caregiver, am I able to provide the needed care and support for my loved one?
- Has my loved one’s care and support needs recently changed?
- Can I (and family members) provide the needed care and support for my loved one or are his/her needs beyond my/our capability?
- Am I able to manage the stresses associated with caregiving?
The answers to these questions may help guide decision making about the types of housing and long-term care services that can support individuals with AD over the course of their illness. Please see the resource and reference sections below for links to additional information.