Dementia is not a specific disease, but instead is a term that refers to a set of symptoms that cause progressive memory-loss, problem-solving, and language. Being given a dementia diagnosis can be a profoundly jarring experience. Many dementia patients feel isolated by their diagnosis and by people’s misunderstanding of their condition.
Being a caregiver for someone with dementia can be a taxing experience. To better help family members, friends, and caregivers better understand, here are ten things that dementia patients want their caregivers to remember.
1. Life is still pretty much the same in the early stages
In the early stages of dementia, the symptoms may be virtually unnoticeable. Initially, patients may only require a planner or more alarms to trigger a patient to remember specific tasks that need to be done. To do lists for the day may sometimes be all a patient needs at first. Things like driving, preparing food, and going out on their own is still perfectly safe and acceptable for most people. Sometimes, people may be surprised by how much early-stage dementia patients can remember, but it’s not uncommon.
2. The patient may notice symptoms more than the caregiver
That being said, because of how subtle many of the symptoms are, other people may initially not notice them. Dementia patients often notice their minor symptoms more than anyone else, which may lead people to make comments like: “you don’t seem like you have dementia.” This can be frustrating for patients since they know that, unless a person spends a lot of time with them, they may not see the changes to their personality or the frustrations they experience.
3. Every stage of dementia is different for each patient
While there are general guidelines for what to expect as dementia progresses, each person’s symptoms will progress differently. Even if you’ve been around other dementia patients, that doesn’t necessarily mean you can expect the same responses or issues. Early stage memory issues may mean conversations are difficult to follow, or they have a tendency to get lost more easily, but that doesn’t mean middle stage issues like personality changes and agitation won’t happen periodically in the early stages as well. Learn how to create a dementia care plan so that you can better track symptoms and stages to help keep track of changes.
4. It’s not being done on purpose
Having to repeat yourself to a dementia patient can be frustrating, but it’s important to remember not to let your impatience overcome you. Caregivers or family members may be tempted to say “I’ve already told you this,” but all that will do is further confuse the person who has dementia. Instead, simplify the way you tell them things and be willing to repeat, even if you’ve already said it 40 times.
5. Be cautious about reminding patients their loved ones are dead
Imagine if you had to find out every day that your parents, spouse, or pets were dead. This horrifying, shocking discovery would be jarring and confusing, as well as triggering deep stages of grief. This is precisely what happens to a dementia patient when they are reminded of the devastating fact that their loved ones are dead. Instead of unnecessarily reminding a dementia patient that their loved ones are dead, say they’re not here at the moment or ask if they want to go for a walk and look for them.
6. Socializing is still important
Don’t try to force dementia patients to stay home, especially in the early stages where only minor cognitive impairment is the issue. Loved ones can become overprotective in the early stages of dementia, but socializing is still deeply important and will help dementia patients stay sharp and enjoy time with friends and loved ones. Even in the middle stages, dementia patients may forget who certain people are, but will still enjoy being surrounded by people who care for them.
Let dementia patients still be involved in the community or the arts and see their friends regularly. It’s been shown that forming deep friendships can help prevent dementia in the first place.
7. Don’t take away things from a sufferer before it’s time
It’s hard enough for a person living with dementia to know that they will slowly lose a lot of their abilities, including their ability to communicate and care for themselves, without things being taken from them early. It’s important for caregivers not to exacerbate this stress by taking away a dementia patient’s ability to do things before it’s necessary. Going out for walks, spending time by themselves, cooking, shopping, and driving are all things that are important for dementia patients and that they should be encouraged to continue until they actually can’t do it anymore.
8. Sufferers may become withdrawn and depressed
Depression is common in dementia patients. They may become apathetic or withdraw from family and friends, and people may assume that they no longer want to participate in things. However, it’s essential that you encourage people living with dementia to still participate in events, with maybe a few alterations. Try to include people with dementia as much as possible.
9. They can still enjoy things they used to
Being diagnosed with dementia can make it very hard for people to feel like they can continue with their everyday life. This is why it’s important for people living with dementia to be encouraged to stay involved with associations and groups. Joining something like an Alzheimer’s association can help people who have dementia have a sense of purpose and drive.
10. Be on the lookout for other health conditions
Dementia symptoms can make it hard for caregivers to notice or pick up on other health issues. This is why it’s important to be on the lookout for symptoms unrelated to dementia. For example, many people living with dementia in the later stages forget to drink water. This can lead to dangerous dehydration levels that may go unnoticed until it’s too late. People with dementia may also find it hard to wait for a doctor or to be in hospitals or at the dentist, which can make it hard to treat conditions.