pproximately 5.7 million people over 65 in the US are living with dementia—including its most common form, Alzheimer’s disease1. As the baby boomers age, that number is only getting larger.
It’s not easy to learn that you or a loved one has been diagnosed with dementia. It affects more than just the person with symptoms; it changes the lives of their family and friends, too. And the more you understand about the symptoms, behaviors, and stages of dementia, the better equipped you’ll be in caring for someone with dementia.
What is dementia?
Dementia is not a specific disease. Rather, it’s a general term that describes a wide range of symptoms associated with memory loss or a decline in other thinking skills that is severe enough to reduce a person's ability to perform everyday activities. The varying symptoms are broadly grouped into categories called stages. These stages help guide doctors and families in their care of dementia patients.
Although there's no clear-cut moment when you know that your loved one has moved from one stage to another, the stages act as a marker of how far the disease has progressed. Becoming familiar with the stages of dementia can help guide your expectations and help you decide what kind of care is needed and when to seek assistance, like having a home care professional in your home.
What are the stages of dementia?
- No cognitive decline
- Very mild cognitive decline
- Mild cognitive decline
- Moderate cognitive decline
- Moderately severe cognitive decline
- Severe cognitive decline
- Very severe cognitive decline
Early stage dementia
During early stage dementia, a person can function independently—they're still driving, working, and taking part in social activities. Despite this, the person may start feeling as if they are having memory lapses. They might start forgetting familiar words or the location of everyday objects. You may start to notice they:
- Have changes in short-term memory
- Lose interest in things they used to enjoy
- Have a shorter attention span
- Have trouble with balancing a checkbook
- Have difficulty with routine tasks
- Can't find proper words
- Start making bad decisions
Caring for someone with early stage dementia
If you’re noticing signs of early stage dementia, it’s time to get a medical evaluation.
When you’re a family caregiver, that's sometimes easier said than done. Memory loss and dementia may not be something your loved one wants to consider. However, dementia might not even be the culprit of the memory lapses or other recent changes; that’s why it’s important to get an evaluation.
Here are some ways you can care for someone during early stage dementia:
- Talk to your loved one. Have they noticed they're having difficulty with routine tasks or memory lapses? Let them know, "This could be your medicine. It could be your diet. You haven't been to the doctor in awhile. Let's just go and see what they have to say."
- Offer assistance, as needed. See if they want help paying their bills or balancing their checkbooks.
- Start writing reminder lists, or even use Post-Its. Put the reminders on cabinets, fridges, mirrors—wherever it may help your loved one remember what they need to do.
Middle stage dementia
Middle stage dementia is typically the longest stage and can last for many years. You may notice the person is confusing words, getting frustrated or angry, or acting in unexpected ways, such as refusing to bathe. Damage to nerve cells in the brain can make it difficult to express thoughts and perform routine tasks. You may also notice they:
- Do not want to change clothing
- Are ambivalent about social graces
- Have difficulty recognizing our using common objects
- Do not have good posture
- Have knowledge of only the past
- Have an increase in memory loss
- Experience sleep disturbances
- Get lost easily
- Need help with activities of daily living (e.g., bathing, dressing)
- Are confused about time
- Need constant supervision
Caring for someone with middle stage dementia
As a family caregiver, you may need more help at this stage, because there are a lot of safety issues with your loved one. Their sleep disturbances may stem from an inability to tell the difference between day and night, and so they may get up and wander around. They may get lost. Is your loved one still safe living at home independently? Even if they move to your home, will you be able to give them the supervision they need?
Here are ways to care for your loved one with middle stage dementia:
- Purchase a lot of the same outfits. Your loved one may avoid changing their clothes, because they're having a hard time making choices. If they're gravitating toward a certain outfit, just get a few versions of it!
- Don't take them into situations where they might embarrass themselves or feel uncomfortable. Avoid large get-togethers or new places.
- Help them recognize common objects by saying them aloud. For example, when you hand your loved one a pen, you can say, "Here's your pen."
- Avoid asking about recent events. Don't ask them what they had for breakfast; they're not going to remember, and it might just frustrate them more.
- Bring out photo albums and old scrapbooks to flip through. You could even create a memory box together. Live in the past with them. Right now, that's where they're comfortable.
Late stage dementia
In the final stage, individuals lose the ability to respond to their environment, to carry on a conversation, and, eventually, to control movement. They may still say words or phrases, but communicating becomes difficult. As memory and cognitive skills continue to worsen, personality changes may take place and individuals need extensive help with daily activities. During late stage dementia, you may notice your loved one may:
- Wear clothes inappropriately
- Seem like they've lost their social graces
- Look "lost in thought"
- Have severe speech or language deficits
- Have lost weight
- Cannot communicate their needs
- Have lost motor skills, such as walking and eating independently
- Experience bladder and bowel incontinence
- Have problems swallowing
- Cannot express meaningful speech anymore
- Not recognize self or family
How to care for someone during late stage dementia
When a loved one's safety becomes compromised and their ability to verbally communicate is lost, you could consider bringing your loved one to a memory unit, if you haven’t done so already. If you’d like to keep them at home, you’ll need full-time home care, or a combination of family supervision supplemented by a home health aide.
Your loved one isn’t going to be able to communicate their needs, so you need to anticipate them. Here are some ways to do that during late stage dementia:
- Keep your loved one on a strict schedule. If they eat at the same time, you can predict they'll have to go to the bathroom a couple of hours later.
- If they're on bed rest, promote circulation and flexibility by changing position and gently moving extremities, as long as there is no pain.
- Watch for signs that mean the level of care might need to change, and call the physician when you see them. Bed-wetting means a loss of bladder control; trouble swallowing means it might be time to consider a feeding tube.
It’s also important to engage in self-care during late stage dementia. There are family support groups that can help you process some of the difficult feelings. It’s not easy to realize your loved one doesn’t recognize you and may not even like you in their dementia. The best way you can support them is by supporting yourself.
The progression of dementia can vary widely from person to person. Regardless, caring for a loved one with moderate to severe dementia is very challenging. Seeking the assistance of a professional trained in dementia care—such as a BAYADA home health aide—is key to keeping your loved one safe and giving you the peace of mind you need.
1Alzheimer’s Association, 2018