An all too common scenario for many families: Mom was recently diagnosed with Alzheimer’s disease. She’s been living alone, with help from her two adult children—who now are wondering how Mom’s memory loss will affect the way they provide care for her. They’re worried her home might not fit her future needs as the disease progresses.
This family is not alone. More than 5 million Americans age 65 and older are living with Alzheimer’s dementia and 80 percent of those are age 75 or older, according to the Alzheimer’s Association. Two-thirds of Americans over age 65 with Alzheimer’s dementia (3.6 million) are women.
More than 15 million Americans today are providing unpaid care for loved ones who have Alzheimer’s disease. Caregivers of people with Alzheimer’s or other dementias provided an estimated 18.6 billion hours of unpaid care, a contribution valued at $244 billion, according to the latest data from the association. Almost half of all caregivers (48%) who provide help to older adults do so for someone with Alzheimer’s or another dementia. Approximately two-thirds of caregivers are women, and one-third of dementia caregivers are daughters. Forty-one percent of caregivers have a household income of $50,000 or less.
Once a loved one is diagnosed with Alzheimer’s or a related condition, the family must go into planning mode. What is the best way to care for the
ir loved one? How will their loved one’s condition change over time? Is a nursing home the only solution?
Planning is important. Home care experts can help families learn about the resources that are available in their loved one’s community.
Today there are more long-term care facilities that specialize in caring for people with dementia. But research shows that most people with Alzheimer’s disease do best if they can stay in their own home as long as possible, in familiar surroundings. Often, a move to a facility results in rapid decline. If your family wants to help a loved one stay in their own home, or in the home of a family member, here are some questions to answer:
Is the home a good fit? Basic senior safety and security factors become all the more important when an elder is living with cognitive impairment. Do the stairs have sturdy handrails? Are carpets secured so your loved one won’t trip on them? Are hazards removed that could cause a fall? Are guns securely locked up? If it’s no longer safe for your loved one to drive, are car keys kept out of sight? Is the hot water set at a temperature that would not cause burns?
How will the home need to change? Certain adaptations can make a home a better fit for a person with memory loss, including safety knobs on stoves, special locks on doors, adding strips of contrasting color on stairs, and removing mirrors that might cause confusion. Find more practical suggestions from the Alzheimer’s Association and the National Institute on Aging.
Who will care for our loved one? This is the most important question of all. The Alzheimer’s Association’s 2017 Alzheimer’s Disease Facts and Figures report illustrates that the strain of caregiving produces serious physical and mental health consequences. For instance, more than one out of three (35 percent) caregivers for people with Alzheimer’s or another dementia report that their health has gotten worse due to care responsibilities, compared with one out of five (19 percent) caregivers for older people without dementia. Also, depression and anxiety are more common among dementia caregivers than among people providing care for individuals with certain other conditions.
What resources are available to supplement the care our family can provide? As early as possible, learn about assistance that is available for your loved one, and for your family as they provide care. Ask your loved one’s doctor to refer support services and educational resources. Many caregivers report feeling unprepared for the caregiving tasks they’re called upon to perform, and unsure if they’re doing things correctly. One of the top tasks for family caregivers is to learn their loved one’s “language”—what do behavior changes reveal about their loved one’s needs? Classes, online information and support groups can be of great help, offering practical tips and the emotional relief that comes from knowing you’re not alone.
The role of home care
Today, more families are hiring professional in-home care to help keep their loved ones with dementia safe at home—whether home is the person’s own house or apartment, the home of a family member, or a senior living community. In-home caregivers help with medication management, provide transportation to medical appointments, and assist with the activities of daily living, such as bathing, dressing, grooming and incontinence care, always with the goal of preserving the senior’s dignity. They can prepare meals when it’s no longer safe for the client to use the stove. They provide supervision and encouragement to help clients remain physically active, which is important, because exercise improves sleep and well-being. People with dementia continue to benefit from meaningful social interactions and tasks; and caregivers provide companionship and mental stimulation in a nonjudgmental manner.
Professional home caregivers partner with families to create an effective care plan that can evolve as the client’s needs change. The plan should support the health and well-being of family caregivers, allowing for respite that lets them take a break for their own needs. Home care also allows family members to continue their paid employment rather than quitting their job to care for their loved one. Studies show that many caregivers, especially women, leave the workforce at this time, which can have a negative effect on their own long-term financial situation.
It’s important to find an agency that provides special training on dementia care for their caregivers. An untrained caregiver can misinterpret the common behavior changes of dementia, reacting in a way that increases, rather than addresses, such behaviors as aggression, confusion, wandering or sleep disturbances. Experts know now that the way a caregiver interacts with a person with dementia makes all the difference in maintaining their well-being.
Source: Assisting Hands Home Care in association with IlluminAge. Copyright © IlluminAge, 2017. The article was updated in 2020 to reflect latest data from the Alzheimer’s Association.