Navigating the Challenges of How To Cope With a Parent With Dementia

You may have noticed some recent subtle or not-so-subtle mental, physical, and emotional changes in your parent’s health condition or behaviors, and they now received a diagnosis of dementia. 

What does a dementia diagnosis mean for their future — and your future as a caregiver? 

Caring for a parent with dementia can be overwhelming and challenging, and you may feel alone and discouraged during the journey. However, there are a variety of ideas, care approaches, and care settings that can be of great assistance to you both. 

Discover some helpful tips, explanations, and care environments that will provide support and hopefully, some clarity for the future you and your loved one are both facing. 

Table of Contents

• Coping With a Parent With Dementia Is Never Easy
• 10 Tips for How To Cope With a Parent With Dementia
• What Should You Not Say to a Parent With Dementia?
• When Should Someone With Dementia Go Into Care?
• At Senior Services of America, We Believe Coping With a Parent With Dementia Takes a Village

Coping With a Parent With Dementia Is Never Easy

In the beginning stages of dementia, your loved one may realize they are having trouble finding the right words to say, forgetting directions to regularly traveled places, or even the names of their family members. 

This is not only challenging for your parent, but also difficult for their surrounding family and friends as spectators of the disease. 

At times, the diagnosis can be a precursor to the grief process— as the person you once knew, along with their life events, memories, and abilities are slowly declining or even disappearing. 

Coping with dementia is never an easy task, and no one should expect to know how to tackle every challenge or scenario they face as the inevitable declines occur. Caregivers should expect to need support and assistance in caring for their parent — especially if the parent remains in their own home or the home of a family member.

10 Tips for How To Cope With a Parent With Dementia

#1: Be Realistic

Your parent will progressively need more care as their dementia progresses, and you need to consider how much care you can comfortably provide for them. It can also be a scary process, as you are now caring for someone who once took care of you.

The amount of care will increase based on the stage of dementia. Caregivers should consider the following: 

• What may present now as bouts of memory impairment or difficulty navigating to usual places can quickly turn into much more intimate task needs such as bathing and dressing. 
• Think ahead to the care needs your loved will eventually require – are you mentally, emotionally, and physically able and willing to complete these care needs for your loved one? 
• There may be some potentially uncomfortable situations for you or your loved one — as a daughter, are you willing to assist Dad with toileting, dressing, and bathing? Develop realistic expectations for yourself and your parent and be willing to request assistance when needed. 

Dementia is a difficult disease to navigate, and there are boundaries to what you can do for your parent or loved one. Care needs can become enormous and overwhelming, and your love for them does notnecessarily mean that you must be their full-time caregiver, nor does it mean that you are adequately prepared to deliver all their care needs. You don’t have to do this alone.

#2: Savor the Moments 

Dementia has stages of progression, and it can be difficult and daunting to realize that whatever stage your loved one is experiencing at present — it will, unfortunately, notget better.

Although difficult to think about, it is important to savor the good moments. 

There will be “good and bad” days for your loved one. When they are having a “good” day, embrace it. They may be able to participate more in their care that day or time, be more conversive, or recall an event or memory they enjoyed from their earlier days. 

Whatever it may be, take a moment to encourage them, engage in conversation, or ask questions about the memory. 

Though it is challenging, try to enjoy the good times — attempt to be present in the moment, enjoy glimpses of happiness, and reminisce over pastimes. 

#3: Be Patient and Supportive

Utilizing patience and providing support and encouragement are vital when caring for someone with dementia. 

Even in the early stages of dementia, your loved one may show signs of difficulty “word-finding” — recalling regular, everyday words. This can be very frustrating — as it would be for anyone unable to communicate normally. 

Let your loved one know you are listening and trying to understand their thoughts and actions. Try not to interrupt them when communicating and allow additional time for them to attempt to explain their thoughts, statements, or questions. 

Your loved one may find it more difficult to start or stop a task or have difficulty completing a task. You can encourage and support them by breaking down a sequence and allowing additional time to complete each one. 

For example, when cooking, you can finish measuring ingredients, and they can stir. They may also need a demonstration of the task to remind them how to complete it, along with additional cues or encouragement that they are doing a great job. 

Seek Help When Needed

Taking care of a loved one with Alzheimer’s Disease or other forms of dementia can take a toll on the caregiver(s), sometimes to the point of physical injuries or mental health declines. 

The estimated number of diagnosed Alzheimer’s patients in the United States is approximately 7 million, with the number expected to rise to 13 million by 2050. Alzheimer’s Disease was the 5th leading cause of death in 2021 for people ages 65 and older — leading to enormous costs for healthcare and long-term care needs. 

As your loved one’s care needs evolve and progress within the diagnosis, it is imperative to understand what care needs you can assist with and what you cannot—understand your limitationsand do not be afraid to seek additional help. 

Reach out for help from additional caregivers, including other family members, friends, or respite programs. 

There are a variety of in-person or online local support groups for caregivers in which you could participate, along with online national-level support groups: 

• Alzheimer’s Association® (24/7 Helpline: 800-272-3900)
• Caring Bridge
• Dementia Action Alliance
• Caregiver Action Network

#5: Be Kind to Yourself

You may be caring for your loved one with dementia in their own home, or they have been living with you — but now the care needs have escalated related to nutrition, hygiene, or even safety concerns too far out of your realm of comfort or knowledge.

You may have been honoring your parent’s wish to stay in their home and not go to a facility, but you are overwhelmed. 

The decision about where your loved one will receive the necessary and appropriate care is a very personal—and often difficult—decision. 

 What do you do?

Be kind to yourself – ALWAYS. 

All situations are varied, and you should never compare yourself to another caregiver – and remember nobody is equipped to handle the responsibilities independently. 

#6: Connect with Your Parent

Connecting with your parent dealing with dementia may be difficult at times — and in those moments, difficult may feel like an understatement. 

One of the best ways to reground yourself and help your parent during those moments may be to engage them in activities they once actively pursued and enjoyed.

These connection activities may involve:

• Playing games
• Music
• Dance or exercise as they are able – even in a chair or wheelchair as needed
• Crafts, art mediums
• Reading
• Gardening
• Reminiscing
• Family photos and albums

#7: Focus on Feelings Over Facts

Facts over feelings may be the way our world functions, but this is not the case for a dementia caregiver. 

Your loved one may be unable to state exactly how they are feeling correctly or the need they are trying to meet as dementia progresses. 

During these times, focus less on the words they are saying and more toward their reactions behind the words – or the lack of verbal communication. 

An example would be your loved one appearing fearful or agitated during bathing and repeatedly stating, “I don’t like cheeseburgers.” In this instance, the task of bathing may upset them, but they are unable to communicate with appropriate words. 

Monitor non-verbal communications such as:

• Facial expressions
• Body language during care
• Emotional responses to stimuli. 

These responses may be much more important than words they can (or not to) communicate. They may be the sole indicator of whether they are happy, sad, angry, or frustrated.

#8: Understand Their Emotional Needs

Your loved one’s emotional needs and even personality may suffer changes due to the disease process. Those dealing with dementia continue to need loving, caring, and safe relationships and interactions, but dementia may affect their ability to understand interactions that may have been routine and normal earlier in their lives.

The emotions they may have handled without difficulty in their earlier years may become too overwhelming – leading to sadness, distress, or negative behaviors.

This could result from being extra-sensitive in a busy or noisy environment, even though they previously enjoyed large parties or gatherings. Avoiding too much stimulation at once can be helpful and result in positive visits and interactions. 

This may involve staying in surroundings that remain calm and quiet — with only one or two people visiting them rather than a larger group.

Dementia may also change who and how they remember their loved ones — which can be emotionally draining for everyone involved. It’s often helpful to introduce yourself at the beginning of visits regardless of whether their nonverbal communication communicates joy in seeing you.

 “Good morning, Mom – it’s me, your daughter, Amy.” 

Despite the introduction, try not to be disappointed if they do not recognize you and assign a different role to you, such as their friend rather than their child.

Try to remember that changes in personality or emotional response are directly related to the disease process and are not your loved one’s choice. 

#9: Don’t Argue

Be sure to continually offer love and support without correcting your loved one or arguing an incorrect statement, memory, or even current point of view. 

Sometimes, it is helpful to delve into “storytelling” if you note confusion during a visit. 

For example, if they repeatedly ask for their sister who passed away years ago, rather than repeating details of her death, your answer might be:

 “She’s not available today; I’ll tell her you asked about her when I talk to her next time.” 

Although it may feel like you are lying to your loved one, a simple story may be much less distressing to them.

#10: Keep Your Sense of Humor

The diagnosis and onset of symptoms from dementia may change the personality, sense of humor, and cognition of your loved one. It may feel like dealing with a wound that will never heal, but the potential for “laughter being the best medicine” remains.

But how do we find humor in dementia? 

Simply reminiscing about life may stimulate conversation about funny events in the past, childhood stories and adventures, or just being silly or lighthearted during routine daily tasks. 

While the diagnosis of dementia is difficult, grasping even small moments of joy when possible, may make it a little easier.

What Should You Not Say to a Parent with Dementia?

When addressing a person with dementia, avoid any topics that would cause distress, and always speak to them as an adult with a kind tone.

Recommended conversations to avoid:

• Avoid speaking to them in a child-like tone
• Avoid arguing
• Avoid telling them they are incorrect about a fact, story, or life event
• Avoid asking if they remember an event, person, or place
• Avoid reminding them a spouse, family member, or friend has previously passed away
• Avoid topics with previously known conflict, or events that have upset them in the past
• Avoid terms of endearment such as “honey, sweetie, dear”, unless they prefer the nickname

Positive approaches for conversation:

• Keep sentences short and simplified
• Speak clearly and slowly, if needed
• Make eye contact
• Listen to responses carefully, note body language
• Be patient and respectful

Remember, you are unable to control the progression and memory impairments of dementia, but you can control your response to your loved one.

When Should Someone with Dementia Go into a Care Home?

The daily responsibilities never seem to end, and you understand the disease will inevitably progress.

When someone you love is diagnosed with Alzheimer’s disease or dementia, it can be difficult to determine when and where they will receive the appropriate care. Considerations such as… 

 “Mom would have never wanted to live somewhere other than her own home” 

… can lead to feelings of overwhelming responsibility and even guilt, but sometimes the daily care, overall health concerns, and even safety beg the question: 

When is the correct time to consider a care facility?

The answer depends on many different factors, including your own safety and the wellbeing of your parents. 

Talk with your parent’s medical care team, consider what you are capable of, and reach out to memory care facilities in your area — they can assist you in deciding on if it’s the right time to start considering a facility. 

In the right setting, your loved one’s care needs are not only met but may also be improved and uniquely tailoredfrom what was accomplished at home or in a private setting. 

Positive aspects of care provided in a Memory Care or Long-Term Care setting:

• Daily socialization
• Assistance with personal hygiene needs
• Exercise classes
• Artistic opportunities
• Secured location
• Individualized nutritional provisions
• 24-hour care staff

At Senior Services of America, We Believe Coping with a Parent with Dementia Takes a Village

There is not one person who is fully equipped to care for a loved one with dementia alone – it takes a village. 

Senior Services of America communities aim to deliver the best possible memory care to our residents, offering you peace of mind and a safe environment for your parent.

In our communities, we prioritize our patient experience. Our goal is to ensure your loved one enjoys care, activities, support, and relationships on a daily basis. This allows you to be their spouse, family member, or friend and relinquishesthe stress of the caregiver role. 

Find your nearest community today to learn more about your options when caring for a parent with dementia.