As you were growing up, your parents may have been your caregivers, mentors, and support system. They were the ones you went to when you needed advice, had questions, or just wanted to talk.
But now that you’re grown up, you may notice that they are struggling with issues like memory loss or other signs of cognitive issues. While these changes may be simply a part of aging, they could also be signs of something more serious, such as dementia.
If one of your parents has been diagnosed with dementia, that means they are losing their cognitive functioning skills: thinking, remembering, and reasoning. They may also lose behavioral abilities such as speaking, problem-solving, paying attention, or controlling their emotions.
You might notice personality changes, too. Maybe they used to be the jokesters of the family, but they’re becoming more serious as their dementia progresses.
If your parent is diagnosed with dementia, it’s completely normal to feel lost or like you’re mourning the loss of your parent while they’re still alive. Dementia can be confusing, overwhelming, and sometimes scary. The roles have reversed — your strong caregiver has become the patient, and that can be difficult to cope with.
It may be hard to watch your parent struggle with dementia, but there are ways to make the situation easier for both of you.
The Details of Dementia
Dementia is caused by neurons (nerve cells) that were once healthy but have stopped working, lost connections with other cells, and died. This happens to everyone as they age, but it occurs more in people with dementia.
The most common cause of loss of brain cell function is Alzheimer’s disease, but a person can also experience dementia because of:
- Lewy body dementia: a disease that causes abnormal proteins to develop in the brain
- Frontotemporal disorder: a disease that damages the frontal or temporal lobes of the brain (the parts of the brain that allow you to prioritize, plan, multitask, manage emotions, communicate, and remember)
- Vascular dementia: dementia caused by a stroke or other brain injury
- Parkinson’s disease dementia: dementia that develops in people with Parkinson’s disease (a condition that causes changes to the parts of the brain that affect movement) at least 1 year after diagnosis
It’s also common to have a combination of these causes — called mixed dementia.
Dementia is typically diagnosed by a neurologist — a physician who specializes in disorders of the brain. Diagnosis usually involves tests related to mental functioning, laboratory tests such as blood tests, brain scans, psychiatric evaluations, and genetic tests.
Dementia can be mild in the very beginning stages. Your parent may simply lose their keys often or call you by your sibling’s name. But when it becomes its most severe, your parent may become completely dependent on others for assistance with basic activities, such as going grocery shopping or maintaining personal hygiene.
So, Your Parent Has Dementia — Now What?
If your parent tells you that they’ve been overly forgetful, struggling with thinking clearly, or have already been diagnosed with dementia, it’s important to be supportive.
While this news may be upsetting to hear, remember that your parent is also feeling a range of emotions — anger, denial, resentment, fear, isolation, and a general sense of loss. It’s scary and frustrating for them to lose something as vital as their thinking capabilities.
Take the time to talk to them about how they’re feeling and how you can help. You may also want to ask them:
- Do you want me to go to your appointments with you?
- Do you want me to check in on you at home?
- Do you want me to help you tell other family and friends about your diagnosis?
- What else can I do make this process easier for you?
Keep in mind that some of these questions may need to be revisited as their dementia progresses. You may also need to consider making some decisions on your own — such as checking in on them more often — for their safety and well-being.
The Stages of Caregiving for Dementia
You’ll need to decide how much of a role you want to take on during the caregiving process. If you have siblings, talk about what’s best for everyone involved. Keep in mind that your role as a caregiver will likely change as dementia progresses.
As dementia increasingly impacts your parent’s life, your potential role as a caregiver will change. For example:
- Early-stage caregiving usually involves providing support and companionship, as well as helping your parent plan for the future.
- Middle-stage caregiving typically involves helping your parent cope with behavior changes, working through communication challenges, and assisting with daily care needs — such as dressing and driving. You’ll also want to consider ways to increase your parent’s safety, which may include monitoring their medication schedule or setting reminders for them to eat meals.
- Late-stage caregiving is generally much more involved. You may need to assist your parent with basic skills, like eating, walking, and bathing. This stage can be much more emotionally challenging for both you and your parent. At this state, you might consider hiring an in-home nurse or bringing your parent to a nursing home.
How Is Dementia Managed?
In most cases, there is no cure or treatment that will stop or even slow down the progression of dementia. However, some medications can help alleviate symptoms related to memory, thinking, language, or judgment.
You can also manage your parent’s symptoms using coping techniques, such as:
- Monitoring your parents’ comfort to avoid irritations that can trigger symptoms, such as checking for skin irritation, room temperature, and fatigue: This can be done by asking them how they are feeling or making assessments based on any changes
- Avoiding confrontation with your parent
- Redirecting their attention when they seem agitated, such as patiently repeating a question you asked
- Maintaining a calm environment by avoiding too much noise or background distractions, such as television
- Allowing your parent plenty of time to rest, especially on busier days
- Providing them with a security object, such as a blanket or a photograph
- Acknowledging when your parent asks you for something and not ignoring them
Changes in your parent’s surroundings — such as a move, a new caretaker, or a change in their routine — can trigger symptoms. For someone with dementia, change can increase the fear and fatigue of trying to make sense of an already confusing world. By identifying what triggers your parent’s behaviors, you can better understand how to manage their symptoms.
When your parent is having an episode, remember that your parent loves you, and try not to take their behavior personally, as it’s a reflection of their disease.
When Your Parent Is in Denial about Their Dementia
While you might hope that your parent recognizes their difficulties with thinking on their own, you may be the one who notices when they forget names, repeat questions, or lose their train of thought frequently.
You may have tried to encourage your parent to find out more about their dementia — only to be told that they don’t think anything is wrong. It’s important to keep in mind that it takes time to accept a diagnosis like this.
You’ll need to be patient, flexible, and communicative during this stage. You may also want to:
- Allow time for your parent to come to terms with their dementia on their own by talking to them or giving them personal space.
- Remind your parent about the roles that are still important to their identity — such as grandmother, father, daughter, etc.
- Encourage your parent to speak with someone they trust — a close friend, a health care provider, a spiritual care provider, a trained counselor, etc.
The simple reminder that they are not alone can go a long way to show your support.
Prioritizing Your Own Health While Caring for Your Parent
It’s easy to forget about yourself while you’re caring for a parent with dementia. However, this will not only hurt your own wellbeing — but it can also hinder your ability to continue supporting your parent.
You can prioritize your own health by:
- Seeing your primary care provider regularly — and letting them know if you are experiencing issues such as excessive stress, difficulty sleeping, exhaustion, or changes in appetite
- Staying physically active: Try to get at least 30 minutes of exercise at least 5 days a week. If you’re feeling crunched for time, ask a friend or family member to help out with caregiving while you exercise, find ways to exercise at home using free weights, the stairs, or an exercise video, or include your parent in your routine as much as possible. You can take a walk outside, take a stroll indoors at the mall, or do seated exercises together at home.
- Eat well, and avoid drinking too much and smoking: Find a heart-healthy meal plan that incorporates whole grains, fruits, vegetable, and lean meats. You may also want to include your parent in making these healthy eating decisions.
- Manage your stress, and make time for yourself: Take breaks to do the activities that you enjoy, and don’t hesitate to talk to a close friend or trained counselor to help you cope.
Remember: You Are Doing Your Best
As you are caring for your parent, remind yourself often that you’re doing all that you can — and be realistic about how much you can contribute to their care.
After all, all your parent wants to know is that you love them, support them, and will find ways to enjoy meaningful moments with them during this challenging time in your lives.
Have questions about coping with your parent’s dementia? Call (785) 270-4600 to set up an appointment with a Stormont Vail behavioral health provider to discuss your parent’s dementia and how you can help.