Dementia Care: Keeping Loved Ones Safe and Happy at Home
Of the 5.8 million people in the United States who have Alzheimer’s disease and other types of dementia, many remain at home, an option that’s been shown to help them stay healthier and happier and live longer.
But home care isn’t always easier — caregiving often falls on the shoulders of family members and friends. And these well-meaning loved ones can burn out without the proper support, experts warn.
“The care of dementia is actually the care of two people: the person with the illness and the person taking care of them,” says Johns Hopkins geriatric psychiatrist Deirdre Johnston, M.D. But when Johnston and a team of researchers studied more than 250 Baltimore residents with dementia and their caregivers, they found a staggering 97% to 99% of both groups had unmet needs.
Keeping your loved one safe and happy at home with dementia home care can seem overwhelming. But don’t lose heart: Plenty of help is out there, for your loved one and for you. Here are some tips that may help:
How do I prepare to give dementia care at home?
Understand and Accept Your Loved One’s Dementia Diagnosis
A dementia diagnosis is difficult on both the patient and their loved ones. For many, a diagnosis is the beginning of a long and uncertain journey. “The road ahead could be difficult, but there are resources and education that can help,” says Suzanne Havrilla, D.P.T., director of home support with Johns Hopkins Home Care Group.
Many families begin their path to acceptance by learning more from Alzheimer's support organizations. These organizations often hold support groups for patients and families affected by dementia. They can also connect families to area practitioners and information. “It’s important to reassure families that patients can have a very good quality of life with this diagnosis,” explains Havrilla. “Once they are accepting of that, it may be easier for the caregivers.”
‘Psych Yourself Up’ to Be a Dementia Caregiver
In a randomized trial of 119 caregivers, Johns Hopkins MIND at Home researchers found the most upbeat and positive dementia caregivers tended not to hesitate on interventions. Instead, they jumped right in with environmental modifications, communication techniques and other needed interventions. Four months later, the caregivers were fully engaged and seeing positive changes in their loved ones’ behavior.
Equip Your Home with Assistive Devices
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% of patient needs in those with dementia were safety-related. Another Johns Hopkins MIND at Home study of 88 patients and their caregivers found that the more safety or navigation supports a person with dementia had, the higher they rated their own quality of life.
Treat your Caregiving Like a New Job
Some caretakers find that caring for a loved one with dementia is like a full-time job. A lot of time, attention and life changes can be needed to ensure the loved one’s safety.
As with any job, plan by finding opportunities for short breaks. Talk with family members to see if they might be able to care for your loved one for the night. If that doesn’t work, try researching other methods to avoid burnout.
What dementia home care services are available?
Connect with a Dementia Care Coordinator
There are many elements to consider when beginning to care for a loved one with dementia at home. Legal, safety, health and interpersonal changes will need to be made. Dementia care coordinators can help with safety concerns, medical attention, medication management, nutrition support and more. They can be especially helpful when a loved one is dealing with other medical conditions for which they need treatment.
Some care coordinators will conduct an initial assessment to thoroughly check your home and living situation. They will create a list of needs and work with caregivers to address the improvements most impactful to the home environment. Together, dementia care coordinators and caregivers can fix safety concerns or remove possible triggers before they become a problem. “The goal to this type of care is to keep people at home with the highest quality of life for the longest period of time,” explains Havrilla.
As an added bonus, loved ones who have some assistance from care coordinators remain in the home longer. In a Johns Hopkins Maximizing Independence at Home trial, researchers found that patients who were in contact with a care coordinator at least once a month for 18 months were less likely to move to an institution or die than those in the control group.
To find dementia care coordination services in your area talk to your doctor or local organizations.
Treatment Memory Care Services from the Comfort of Home
Enroll in Medical Alert Programs
Safety becomes more of a concern as dementia progresses. For peace of mind, consider enrolling in programs that can improve or monitor the safety of people with dementia. Many programs offer medical ID jewelry or 24-hour assistance if a loved one with dementia wanders off or becomes lost. If additional assistance is needed, medical alert services (such as Life Alert) can help by checking in on loved ones and notifying caregivers if there is no response.
Check Elder Care and Dementia Care Services in Your Community
There may be times when caregivers are not able to care for their loved one. If additional help is needed during the day, adult day care centers provide entertainment and care for people with dementia while giving much-needed breaks for their caregivers.
Home services are also available to give you more time in your day. Certified nursing assistants can visit your home to help with medical needs, such as administering medications or caring for wounds. If you need more help, in-home health aides can cover light housekeeping, cooking and other nonmedical needs. Some grocery stores and meal services can also assist by delivering food or meals to your home. Try exploring the options that are available to you.
It’s important to ask your loved one’s doctor or dementia care coordinator for local resources and contacts.
Can I care for my loved one at home through all stages of dementia?
Home care is often recommended by experts through end of life. However, every family and situation is different, so permanent home care may not always be possible.
Research shows keeping a loved one with dementia at home helps them be happier and live longer; however, it is most impactful when introduced early. “It’s a preventive model to educate the family to be dementia smart and understand the disease progression and triggers down the road,” Havrilla explains. But if the family is not able to give their loved one the care they need, rehabilitation facilities, nursing homes and assisted living residences are good alternatives.
What if I need more help with dementia care?
Consider Moving to a 55 and Older or Retirement Community
While adding safety features in your existing home is a good option, another option to consider is moving to a community geared to older residents. While these communities may vary in cost, they often come with features that may help care for a loved one at home. Safety features such as nonslip tubs are already in place, and neighbors may have loved ones in similar situations. Many continuing-care retirement communities include areas that offer higher levels of care as a person’s dementia advances. This allows a more active spouse to live independently on the same campus.