A caregiver’s guide to dealing with dementia
If you’re dealing with dementia because your parent, spouse, sibling or care recipient has been diagnosed, it’s important to realize that many things will change over time, including the way that your loved one behaves, the way that the two of you interact and the way that she handles daily activities like eating and grooming. You’ll also have to consider your loved one’s safety in ways than you haven’t before.
As you navigate the world of dementia care, here’s what to expect.
The typical stages of dementia
Dementia is an umbrella term that refers to a decline in memory and mental ability that interferes with a person’s capacity to live her life normally, and it includes Alzheimer’s disease. Symptoms get worse over time.
“An Alzheimer’s diagnosis can change life for everyone in a family, as family members take on new roles and relationships change,” says Ruth Drew, director of information and support services for the Alzheimer's Association. “Understanding how the disease progresses can help, so that families can take steps to be prepared for what’s to come.”
- Early-stage: People with early-stage dementia may seem like themselves, but they have trouble remembering names or new information. They may lose things and have problems completing tasks that involve several steps.
- Middle-stage: People with middle-stage dementia have trouble recalling many things, including details about their own lives and personal histories. They may become moody, depressed or frustrated, and they may refuse to bathe or care for themselves. They may have accidents if they forget to use the bathroom. Some people wander around their homes or even outside, and not be able to recall their name or address.
- Late-stage: People with late-stage dementia can no longer communicate with words. The dementia affects their ability to move, so they may be confined to a bed or wheelchair. Eventually, they may not be able to swallow food or be aware of their surroundings.
Communicating with your loved one
It can be emotionally wrenching if your loved one can’t remember who you are or what you’ve done together but it's advised to continue to address them as an adult. Do your best to remain calm, because people with dementia react to emotions and tone of voice.
“If a person is stressed and nervous, she will sense this feeling and is likely to increase her anxiety or distress,” says Laci Cornelison, MS, LBSW, a research assistant and instructor at the Kansas State University Center on Aging. “Focus on connecting with the person as a human being, whether that is through spoken word or touch: Holding hands, hugs, sitting next to them. Connection can be attained in many ways outside of verbal communication.”
Ensuring good hygiene and nutrition
Gradually, someone with dementia may forget to perform important daily tasks like eating and showering. When you begin to notice a difference, step in to make sure that those duties are fulfilled, either by helping yourself, finding another family member or friend to do it or hiring a caregiver.
“Be watchful for signs of self-neglect, such as foul body odor — a sign of not bathing, wearing the same clothes repeatedly, trash not being taken out, hair not combed, nails not trimmed and noticeable weight loss,” Cornelison says. “These are all signs that the person is beginning not to be able to manage their daily needs on their own and needs more consistent supervision of daily tasks ... help with activities of daily living, meal preparation and monitoring, medication management, etc.”
Caring for your loved one should be a team effort; don’t let all responsibilities fall on one relative.
“Discuss the tasks that will need to be completed and decide who the best fit for that task is,” Drew says. “Not all family members will be comfortable with personal care, such as bathing, but may be able to offer help in other ways, such as preparing meals or handling finances.”
Dementia safety concerns
As dementia advances, it may become harder for your loved one to continue living at home without full-time supervision.
“Unfortunately, constant supervision, as well as elimination of objects and processes prone to injury, does become necessary in many cases,” says Kevin Jameson, president and founder of the Dementia Society of America. “Risks like cutting oneself, creating fires, burns and falls are all very, very real.”
You may need to hire a full-time caregiver — who can also provide you with respite care — especially if you work outside the home.