Of the 5.2 million people in the United States who have Alzheimer’s disease and other types of dementia, 70 percent remain at home, an option that’s been shown to keep people healthier and happier and help them live longer. And with the average nursing home running $50,000 a year or more, home care can be much more affordable than rehab facilities, nursing homes and assisted living residences.
But cheaper certainly doesn’t mean easier— caregiving often falls on the shoulders of family members and friends. And those well-meaning folks can burn out without the proper support, warn experts.
“The care of dementia is actually the care of two people: the person with the illness and the person taking care of him,” says Johns Hopkins expert Deirdre Johnston, M.B., B.Ch., B.A.O., M.R.C.Psych. But when Johnston and a team of researchers studied more than 250 Baltimore residents with dementia as well as their caregivers, they found a staggering 97 percent to 99 percent of both groups had unmet needs.
Keeping your loved one safe and happy at home can seem overwhelming. But don’t lose heart: Plenty of help is out there, for your loved one and you. Here are some tips that may help:
Psych yourself up.
In a randomized trial of 119 caregivers, Johns Hopkins researchers found that caregivers who were most upbeat and positive tended not to hesitate but to jump right in with such interventions as environmental modifications and communication techniques—and four months later, they were fully engaged and already seeing positive changes in their loved ones’ behavior. More inspiration: Research has also found that a close caregiver relationship may be more beneficial than medication for your loved one.
Equip your home.
Simple fixes, such as grab bars in the bathroom, carpets tacked down to prevent falls, and locked gun closets, guard against accidents that drive people into nursing homes. In one study, Johns Hopkins researchers found that more than 90 percent of dementia patients’ needs were safety-related. Another Johns Hopkins study of 88 patients and their caregivers, published in The American Journal of Geriatric Psychiatry, found that the more safety or navigation supports a person with dementia had, the higher they rated their own quality of life.
Connect with a dementia-care coordinator.
In Johns Hopkins’ Maximizing Independence at Home (MIND at Home) trial, researchers found that patients who were in contact with a care coordinator at least once a month for 18 months were 50 percent less likely to move to an institution or pass away than those in the control group. Care coordinators can help with safety concerns, medical attention, medication management, legal and advance-care-planning advice, nutrition support and more. They can be especially helpful when a loved one is dealing with other medical conditions for which she needs treatment—and research has shown that about 60 percent are.
Consider moving to a 55-and-older or retirement community.
Safety features, such as nonslip tubs, are already in place, and neighbors may have loved ones in similar situations. Have more financial flexibility? Continuing-care retirement communities allow the person with dementia to access higher levels of care while a more active spouse can live independently on the same campus.
Consider enrolling in MedicAlert and the Alzheimer’s Association Safe Return Program (alz.org/safereturn; 888-572-8566), which offers medical ID jewelry and 24-hour assistance if someone wanders off or becomes lost. Or purchase a medical-alert service (such as Life Alert) that will check in on your loved one and notify you if there is no response.
Adult day care centers provide entertainment and care for loved ones and much-needed breaks for their caregivers. A home-care service can also cover light housekeeping and cooking. Food-delivery services can bring in meals once or twice a day, and in some states, meals for seniors may be covered by subsidies. Ask your loved one’s doctor or care coordinator for resources and contacts. Two good places to start: the Alzheimer’s Association (alz.org) and the National 211 Collaborative (211.org).
Treat your caregiving as a condition.
Many caregivers constantly debate and struggle with their loved ones about potentially dangerous tasks, such as cooking and driving. Those power struggles compound the physical and mental burden of the care itself. “That’s why, as the illness progresses, in addition to managing the complications of the illness, we focus care on the caregiver,” says Johnston. Try to find ways to arrange frequent breaks, respite care and stress-relief measures as your mandatory medicine.
Advance-care planning: Usually a living will and durable power of attorney for health care, this pair of documents will help your loved ones and doctors take care of you according to your wishes and values if you cannot make health-care decisions for yourself. Advance-care planning is important for all adults, not just those who are older or who have chronic conditions.
Assisted living: A place for adults to live who do not need full-time nursing care but do need help with everyday tasks, such as dressing, bathing, eating or using the bathroom. Residents often need help due to memory disorders, incontinence or mobility issues. Centers offer a homelike atmosphere, providing meals, housekeeping, laundry, recreational activities, transportation and assistance 24 hours a day.
Caregiving: The assistance family, friends and professionals provide to those who are old, sick or otherwise unable to care for themselves. Caregiving can include buying groceries, cooking meals, cleaning, assistance with bathing or personal care, making and driving someone to medical appointments, dispensing medicine, helping someone get in or out of bed, and more.
Dementia (di-men-sha): A loss of brain function that can be caused by a variety of disorders affecting the brain. Symptoms include forgetfulness, impaired thinking and judgment, personality changes, agitation and loss of emotional control. Alzheimer’s disease, Huntington’s disease and inadequate blood flow to the brain can all cause dementia. Most types of dementia are irreversible.
The information from Johns Hopkins is provided for educational purposes only. Johns Hopkins, The John Hopkins University, their affiliates and their employees disclaim any responsibility for errors or any consequences arising from the use of this information. All medical information should be reviewed with a health-care provider.