According to the Alzheimer’s Association, more than 5 million Americans are living with Alzheimer’s disease, almost two-thirds of whom are women. Alzheimer’s is the sixth leading cause of death in the United States, with over half a million people dying of it each year. But between diagnosis and death, there are many years of declining health and incremental changes in function level and capability that often require dementia care. A 2012 study done by the Alzheimer’s Association indicates that approximately one out of seven of those with the disease live alone. So how do they do it?
One of the biggest challenges that families face is trying to determine how to provide dementia care while maintaining dignity and honoring their loved one’s desire to remain in her home. Many friends and professionals may encourage overwhelmed spouses and long-distance adult children to arrange to move their loved one into a long term-care community such as a memory care assisted living home. While this is a very good option for some, it is not the necessarily the best option for everyone. In many cases, it just isn’t financially feasible; in other cases, the person with dementia has the resources to move out of her home, but resists doing so. There are many ways to provide dementia care so that someone with dementia can remain safely at home, particularly in the earlier stages of the illness — and even through the end of the illness by incrementally increasing the care and services that can be brought into the home. Sometimes it’s just a matter of understanding what resources are available and figuring out how to implement them.
One very important aspect of maintaining a safe and secure environment at home for someone with dementia is consistency and routine. In the earlier stages of the illness, a calendar can be used to help him remember his schedule of appointments, scheduled visits, and even medication times. As the illness progresses, however, this may prove to be more frustrating than helpful. With any of the suggestions below, it’s important to make things as consistent and routine as possible, including meal time, visits, phone calls, etc.
The first thing that must be taken into consideration when it comes to dementia care and the decision to keep someone living at home is making sure that everything possible is done to maintain safety. A number of things can be done, but they often need to be customized to the needs of each individual and each home setting.
If the patient has a tendency to wander, or just likes to go for walks, and there is a concern that she may not find her way back, some measures can be put into place to increase safety. If a spouse or someone else is living in the home, it can be helpful to have them install a simple alarm system that will indicate whenever an exterior door is opened. If the patient lives alone, her loved ones can alert neighbors that she could get lost if she is out on her own and give them a number to call if they see her. A number of identification and alert systems can be purchased as well. Something as simple as a Safe Return bracelet can give someone who finds the person with dementia a number to call so that she can be returned home if she does get lost. More sophisticated options include GPS technology, such as GPS shoes that give family members peace of mind without their loved one knowing that she is being tracked. Many local law enforcement agencies have wearable devices that include radio transmitters and can be tracked if the person is reported missing.
Appliances and Tools
Allowing someone to maintain as much independence as possible is a critical element of maintaining dignity. There is a fine balance between anticipating potential hazards and waiting until a crisis to intervene. If it is possible to observe the habits and tendencies of the person with dementia over time, the family can schedule interventions so they are implemented only when necessary. For example, it’s not necessary to unplug the stove just because someone has dementia, but if it is observed that she leaves the stove on, walks away, and gets distracted while doing other tasks, or if she leaves things on the stove that could pose a fire risk, then unplugging the stove is something that should be considered. If she is not able to use a microwave, there are a number of hot plate or single-burner appliances that have an automatic shutoff feature. The same applies to outdoor tools. If the patient is still able to safely mow the lawn and gets great satisfaction from that, then keeping the lawnmower functional can work. If at any point it is no longer safe, it might be time to hire someone to do this task or to disable the lawnmower and only fix it when someone is around to oversee the activity.
Bringing dementia care into the home can be a very good way to give family members peace of mind and let them know how Mom or Dad is doing. Home care can be started at a minimal level to begin with — maybe two or three times a week to help with laundry and meals or provide companionship — and can increase as the needs of the person change. The biggest challenge with bringing in care is helping the person with dementia accept that care. Because he can often be often unaware that his cognition is declining, he is often resistant to care he doesn’t feel he needs.
If finances are an issue or if the person with dementia is resistant to having a stranger in her home, it is worth considering a more informal plan for care and oversight. The family may want to arrange for any family member who lives nearby to check in on their loved one on a regular basis. Even teenagers can be a good version of “eyes and ears” who can report back on how things are looking. If family is not available, or if it’s not convenient for them to check in regularly, they could reach out to neighbors to see if they will either check in on the person or just keep an eye out for things like not collecting the mail or taking care of the lawn.
If the family is concerned about what’s going on in the home but can’t be there, and if they’re not yet ready to bring in home dementia care, they should consider installing a nanny cam or two in the home to get a better sense of what’s going on. A variety of nanny cams are available that can be discreetly placed so that family members can determine if there are safety risks, concerning patterns, or other things going on with their loved one that may need to be addressed.
Having the ability to see their loved one on a regular basis can help the family determine how well he is doing. During video chats, family members can take note of whether their loved one is clean and healthy, if he’s been wearing the same clothes a few days in a row, or if he is speaking clearly. It can also be one way for them to walk their loved one through taking his medications.
Scheduled phone calls can help establish some routine. Some family members have had success calling during medication times and walking their loved one through the steps of taking her medications. One of the problems with dementia is that it is not just a disease that affects memory — it also affects administrative function. Therefore, following a set of instructions can be difficult and often requires cuing. If a family member is able to cue their loved one through the steps over the phone or a video call, the family can feel more confident that she is taking the necessary medications at the correct times.
If meal preparation has become a problem, there are a few options available in a variety of price ranges.Meals on Wheels is a program designed specifically for someone who is isolated, and they can accommodate special diet needs like a low-sodium, diabetic, or low-fat diet. Home care services can also provide meal preparation, including easy-to-heat premade meals that can be left in the refrigerator with instructions.
Adult Day Programs
Arranging for a loved with dementia to go to a day program can help the family ensure that he is getting regular meals, as well as assistance with personal care and medication administration. The routine and social engagement aspect of participating in activities at an adult day program can also reduce daytime sleeping, which can help him sleep better at night.
Sometimes it’s not possible for the family to honor the wishes of a loved one who wants to remain in her own home. However, discussing ideas like these with families can provide them with some options so that every effort can be made to accommodate their loved one while also keeping her safety the number one priority.