Long-Term Care Options for Someone With Alzheimer’s Disease

It can be devastating to learn that a loved one has been diagnosed with Alzheimer’s disease. The brain condition affects approximately 24 million people across the world. In fact, 1 in 10 people older than 65 and nearly a third of people older than 85 have the condition.

While medications can delay the progress of Alzheimer’s disease and slow the decline in memory, reasoning, language, coordination, mood and behavior changes, you may need to consider the housing and long-term care needs of your loved one.

And those needs will change at various junctures over the course of their journey with Alzheimer’s disease.

Clinical health psychologist and caregiver expert Lucille Carriere, PhD, explains what housing and long-term care options are available and how to evaluate what may be best for your loved one.

Housing and long-term care options

Housing and support services are critical issues for someone living with Alzheimer’s disease. Their needs will change significantly throughout the illness, which can span more than a decade.

Upon diagnosis, your loved one may be able to live at home with some modifications to their living space and daily routine, along with the support of their family and friends.

As symptoms progress, personal care services to assist with cooking, cleaning and laundry may become necessary, as well as an increase in support from family and friends in order for your loved one to remain safely at home.

You may also need to address your loved one’s continued loss of cognitive function (thinking, judgment, memory and language) and behavioral symptoms by adding intensive long-term care services.

These services may be delivered in your loved one’s home, community or at a residential care facility. At each decision point, it’s crucial to understand the wishes of your loved one and seek their involvement to the extent possible.

Conversations early in the disease are important to understand their preferences, financial considerations and long-term care options in your community.

Informal support

Family and friends can help support your loved one so they can continue to live safely in their 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 to their loved ones.

“Depending on availability of support, you may consider assembling a network of informal or unpaid caregivers to share in the care tasks for your loved one,” says Dr. Carriere.

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).

Your health insurance carrier can provide an overview of home health benefits that your loved one may be eligible to receive. Assistance with personal care services may be found through your local Area Agency on Aging, which specializes in services for older adults and their families.

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

If your loved one can live independently, this housing option may be best for them. Although loved ones may benefit from extra support (such as managing bills and/or medications), this housing option may still be appropriate.

Continuum of care retirement communities

In this setting, multiple levels of care are provided on one campus. Housing options usually include independent living, assisted living, dementia care and skilled nursing care.

Adult daycare centers

A group program, generally operating during business hours, offers care and support services (meals, social activities, personal care assistance and health-related services) to your loved one if they need assistance and supervision. Some adult daycare centers may provide transportation to the center from your loved one’s home.

Assisted living facility

This type of housing option offers additional support services, like assistance with meals, laundry and medication reminders, along with recreational activities and transportation. Residents usually live in their own apartments. Some facilities don’t accept people living with dementia or may cancel the lease of someone 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 people with Alzheimer’s disease and other forms of dementia. Facilities may be freestanding 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 people with dementia.

Skilled nursing care/nursing home

A facility that provides 24/7 medical care, treatment and therapies along with personal care assistance, nutrition and recreational activities.

Hospice

Palliative care, including hospice, provides specialty medical services for a person living with a serious illness. The goal of palliative care is to provide medical care and improve quality of life by reducing symptoms. Hospice is a type of palliative care that’s offered to those with a terminal illness and a life expectancy of fewer 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.

How to pay for Alzheimer’s disease 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.

Your loved one 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 like homemaker and home health aide, adult day healthcare, nursing home and hospice care. The U.S. Department of Health and Human Services’ website is a resource for information about costs and ways to pay for housing options and long-term care services.

What services are needed?

Your loved one may benefit from various long-term care services and living arrangements based on the course of their illness and specific symptoms. Dr. Carriere says some general questions can help guide the decision-making process at transition points along the way:

• What are the preferences of the individual with Alzheimer’s disease?
• Is the personal safety of your loved one becoming an issue or concern?
• Are they able to:
  • Manage activities of daily living like walking, eating, bathing, grooming, dressing, toileting?
  • Carry out instrumental activities of daily living like 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 their health status recently changed?
  • Does your loved one have other physical or mental health conditions in addition to Alzheimer’s disease?
  • Is their medication schedule complicated, requiring multiple drugs at various times each day?
• Has your loved one’s communication skills changed?
• What is the impact of changes in communication skills?
• Are they experiencing disease-related behaviors such as agitation, confusion or aggression, hallucinations or anxiety?
• Are there times of the day that are more challenging?
• Are they 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 their needs beyond my/our capability?
  • Am I able to manage the stresses associated with caregiving?
  • Do I have sufficient knowledge and skills to provide quality care for my loved one?
  • Do I know where to locate caregiver resources and help if I need it?

Bottom line?

While it can be overwhelming to offer support and care for a loved one with Alzheimer’s disease, the answers to the questions above may help guide decision-making about the types of housing and long-term care services that can support your loved one over their illness.

Take it one step at a time, and make sure you consider their wishes as best as you can as you both navigate the journey together.

“As caregivers, the goal is to select housing and long-term care services for loved ones that meet their unique care needs, promote a quality of life and preserve their sense of dignity,” says Dr. Carriere.