This blog post is a collaboration by Haeli Harris, Lead Clinician and LMFT at Nivati and  Laura Hawkins, Cariloop Care Coach. Check out Cariloop to learn more about how you can help your team help their loved ones.

Navigating the care of an aging loved one is a challenging process, but one that most people will need to engage with at some point in their lives. An estimated 83% of older adults are cared for by spouses, family members, friends and other forms of unpaid caregivers. The toll of caregiving in general—whether for a parent, spouse, child or even yourself—can diminish the ability to remain present in other areas of life, such as work, school, relationships and mental health. When your loved one is an aging adult susceptible to the illnesses that become more prevalent with age, the stress only mounts.

Over 6 million Americans are living with Alzheimer’s Disease and other dementias, with those numbers expected to climb as older generations continue to live longer lives. By the year 2060, an estimated 14 million people will be affected. While Alzheimer’s is a life-changing diagnosis and the most commonly diagnosed dementia, understanding what it means is the first step to learning how to navigate it for your loved one and yourself. As defined by the Alzheimer’s Association, “Alzheimer's is a type of dementia that affects memory, thinking and behavior.” As the illness progresses, daily tasks become more of a challenge, and independence begins to decline. As a result, the need for care is often around the clock.

Here you can read more about the different subtypes of dementia.

Every care journey is unique, and without support, it can feel overwhelming. When caring for a loved one with Alzheimer’s or other dementias, there are things to keep in mind that can ease the stress of your role as a caregiver. In this collaboration of expertise between a Nivati therapist and a Cariloop Care Coach, we will explore how to do just that.

Patricia Johnson is a mental health therapist and has worked as a caregiver for people with Alzheimer's and dementia in hospice settings. She currently works as a mental health therapist for Nivati and uses Solution Focused Brief Therapy (SFBT), Dialectical Behavior Therapy (DBT), and mindfulness techniques with a Psychodynamic approach, and was interviewed for this piece. Laura Hawkins is a Certified Dementia Practitioner with an extensive background in elder care and Alzheimer’s and dementia education. She currently utilizes this background in her position as a Cariloop Care Coach. In these roles, Johnson and Hawkins lend their wealth of experience to helping others navigate the journey of caring for loved ones suffering from Alzheimer’s and other dementias, among the natural challenges that come with caregiving.

Here are their thoughts on how to brave that journey.

Recognizing changes in a loved one

While a formal diagnosis is commonly seen as the catalyst to the care journey of people with Alzheimer’s and other dementias, family members may begin to recognize changes in their loved ones before a formal diagnosis is sought. As a Care Coach, Hawkins often works with caregivers who have noticed signs of cognitive decline in the person they care for and will provide resources and checklists that help identify the need for further evaluation.

Symptoms of Alzheimer’s can present in various ways at different stages of progression in the illness. Here are a few early changes to notice in a loved one that may warrant professional testing:

 
• Difficulty completing routine tasks
 
• Memory loss
 
• Agitation and mood swings
 
• Confusion
 
• Difficulty holding conversations

Challenges to expect

Once a loved one has received a formal diagnosis of Alzheimer’s or another form of dementia, there are certain challenges that can be expected. In many cases, providing care becomes the responsibility of the child or a younger relative, which can create a complex dynamic to navigate as a caregiver. When discussing the hurdles she sees in most of her cases for adult children providing care to parents and older adults in this situation, Hawkins explains, “It can be difficult when the roles are switched—where the children are now the caretakers and having to make very big decisions for their loved ones. It’s a difficult transition.”

Here are challenges your loved one may face and how you can both navigate them:

 
• New environment – If your loved one can no longer live independently, help them feel comfortable by making their new space as much like their original home as possible. Johnson explains, “Make sure that their new environment is as comfortable as possible. Even if it is just pictures of their childhood family and adulthood family and any little tchotchkes they like.”
 
• Forgetting who you are – It will be upsetting. Allow yourself to feel upset, know that it is not personal and that while this is very difficult, you can still have good times together and create good memories.
 
• Thinking people are still alive or living in the wrong year – Go along with it and don’t try to correct them; it runs the risk of confusing or upsetting them.

“Picking your battles is important. People with dementia tend to pick up strange habits. They may put ketchup all over their food, even if it is cake, or put on six shirts. Recognizing and catching yourself… does it really matter if they wear six shirts or want to pace around the room for a few minutes? Let them do what they feel comfortable doing, and make sure the battles are around things that are important, like eating and getting dressed (meeting basic needs).”

- Patricia Johnson, Mental Health Therapist

Self-preservation as a caregiver to a loved one with dementia

While facing all these challenges and caring for another person, taking care of yourself can be exceedingly difficult. It may be scary to process the emotions you are feeling or ask for help.

As Johnson points out: “Caring with a family member with Alzheimer's or dementia is especially challenging because you’re seeing the relationship change and who they are change.”  Caregivers must remember that to take care of their loved ones, they must take care of themselves.

Here are some ways to prioritize self-care while caregiving for your loved one with Alzheimer’s or other dementias.

 
1. Take Micro-breaks
 
2. Do Things You Love
 
3. Ask For Help
 
4. Allow Yourself to Feel
 
5. Practice Self-Care With Your Loved One

1. Take Micro-breaks

When you think of taking breaks, what do you think of?  It is typical to think of vacations, weekends, and days off.

Johnson encourages caregivers to challenge this notion. The concept of micro-breaks can help caregivers get much-needed rest throughout the day.

“Self-care is so important. Caregivers tend to put all of themselves into caregiving, whether that is what they would normally do or not, because it takes so much work. Find ways to be able to fit self-care into your schedule, even if it’s just 30 seconds at a time! Self-care doesn’t have to look like a spa day. It can look like stepping away for 30 seconds and just breathing,” explains Johnson.

And the evidence isn’t just empirical. According to the APA, taking breaks improves mood, wellbeing, and performance.  Here are some other micro-break ideas to spark some inspiration:

 
• Stretch
 
• Take a quick walk up and down the block
 
• Meditate
 
• Listen to one song you love
 
• Eat a snack
 
• Journal (even if you only write a sentence or two)

2. Do Things You Love

Like you schedule time for caregiving, schedule time to recharge your batteries.

As Johnson points out: “A lot of people tend to lose themselves in their caregiving, and after their loved one passes away, they don’t know what to do with themselves. Keeping a part of yourself intact through hobbies while caregiving is essential.”  Here are some questions to help you uncover what you love to do:

 
• What gets me excited?
 
• What helps me recharge my batteries?
 
• What helps me feel calm and experience a sense of peace?
 
• Where do I feel the most at ease?
 
• What do I look forward to the most throughout the week?
 
• What do I enjoy doing, even when I am exhausted?

Try addressing multiple areas of your wellbeing at once for the best results. For example, walking with a loved one can help support physical, social, mental, and even emotional health.

3. Ask For Help

Johnson puts particular emphasis on building a support system. “Making sure you’re asking for help is really important. Not everyone has family or friends that are willing to help. Keep in touch with those friends, know your limits, and know when you need a break.” In another study, the APA found that people with an emotional support system were more than 10% less stressed than those without emotional support.

Johnson also recommends looking into respite care so caregivers can safely take a more extended break if needed.

4. Allow Yourself to Feel

Bottling up emotions is a common habit for caregivers. However, it is a counterproductive coping mechanism that can make caring for your loved one with Alzheimer's or another form of dementia much more difficult.

Try allowing yourself to feel negative emotions and show your feelings in front of your loved one (if you are angry, please step away safely and try the tips in the Take Micro-breaks section). Starting small can help.

For example, if you and your loved one are looking through old pictures and it brings up a lot of emotions, it’s okay to let yourself cry.

Guilt is another familiar feeling that caregivers experience, especially when they ask for help or take breaks to do what they enjoy.

Johnson provides some consolation for those that deal with caregiver guilt. “It is normal to feel guilt. Realize that no one can do this without help, no one can do this all the time, and no one is happy and patient all the time. Not everyone can give primary care, and that is okay. Give yourself a little bit of grace. You can’t be perfect because no human is perfect. If the guilt is becoming something that is really eating at you, that is a good time to step into a support group or therapy. You don’t want to get stuck in that mindset.”

5. Practice Self-Care with Your Loved One

Johnson points out that doing things you both love together helps you learn about the other person while helping both people get the rest they need. “They are the same person, but they will have differences. Taking time to learn who they are now is helpful for the relationship and the wellbeing of both people.”  A great way to practice self-care with your loved one is to preserve and create new memories.

Preserve Memories

Preserving memories by looking at pictures and telling stories can help caregivers connect with their loved one that is suffering from Alzheimer’s or other dementias.   “Looking through old pictures from their childhood are likely the ones that will stick out to them the most. Tell them stories from the pictures instead of telling them, ‘don’t you remember this’? Plus, let them tell any stories that come up for them too,” explains Johnson.

Create New Memories

It is helpful to do new things together to help you get to know who your loved one is now and create new memories. Dancing, music, and movies stand out in Johnson’s mind.

“I built some fond memories with the people I worked with. It’s hard, but it doesn’t always have to feel tough or sad. You can have fun with them. I danced with them all the time and have listened to Frank Sinatra so many times. Someone I worked with loved the movies White Christmas and Singing in the Rain. He would always be brought to tears at the end of White Christmas. He loved it and just being there with him, even though it wasn’t necessarily fun to be rewatching those movies so much. Using that time to build memories with them is wonderful.”

Here are some more ways you and your loved one can practice self-care together:

 
• Go outside together
 
• Take a walk or a drive
 
• Do things your loved one enjoys (find ways to adapt things they used to enjoy and do them today)
 
• Do something you used to enjoy together
 
• Create artwork with clay, coloring books, painting, markers, etc.

On the topic of self-care, Johnson leaves caregivers with this: “You have dealt with stressful situations in the past, and you have coped with them. Going back to those strategies that helped you in the past can help.”

For more information on caregiver self-care (including expanded details on the ideas listed here), check out this other article by Cariloop and Nivati: How Caregivers Can Take Care of Themselves.

Coping With Loss, Anger, and Other Emotions

Feeling an array of emotions is normal, and you don’t need to kick yourself for it.

Johnson explains, “Allowing yourself to grieve the loss is important. Letting yourself feel the emotions come up without any judgment is helpful as well. Recognize that it is normal to have those emotions,"

"Support groups and therapy can help. The Alzheimer's Association is a great way to find support groups.”

Johnson continues: “If you’re feeling anger or losing patience, absolutely step away. Even if you can’t completely step away, just step back in a safe way for a little bit and give yourself a minute to practice breathing. And when you have a larger time frame to step away, allow yourself to process and feel those negative emotions. It’s okay to say ‘I miss you’ or be upset in front of them. They are your loved one; it is okay to do that.”

Finding a New Normal

Hawkins explains, “Everyone’s care circumstances will look different. Some will go to memory care, and others won’t… Some roads will be easier than others. But having support makes a difference in every case.”

What’s ‘normal’ will look different for every caregiver and their loved one on a journey with Alzheimer’s or another form of dementia, and that’s okay. Processing the diagnosis, accepting the diagnosis, and remembering that there’s still life on the other side of a diagnosis for both yourself and your loved one are the first steps in getting comfortable in your new reality.

Taking advantage of available resources, therapy, support groups, and employer benefits such as caregiver support can alleviate the stress you feel as a caregiver while maintaining pieces of their prior life can keep your loved one comfortable and engaged.  

Resources

It can be easy to feel alone when navigating the care of a loved one with Alzheimer’s, but there are avenues for relief and support that can meet you and your loved one where you are in your care journey.

 
• The Alzheimer’s Association
 
• Assisted living and memory care facilities
 
• Respite care
 
• Community programs
 
• Virtual and in-person therapy
 
• Support groups
 
• Caregiver support benefits

For individualized assistance, consider reaching out to your employer regarding mental health and caregiver benefits. Taking advantage of these benefits can help alleviate stress within your caregiving situation.

For more self-care tips, check out Nivati's Mental Fitness Toolkit.

For more information on caregiver support, check out Cariloop’s Mental Health Awareness Toolkit.‍‍

Disclaimer

By participating in/reading the service/website/blog/email series on this website, you acknowledge that this is a personal website/blog and is for informational purposes and should not be seen as mental health care advice. You should consult with a licensed professional before you rely on this website/blog’s information. All things written on this website should not be seen as therapy treatment and should not take the place of therapy or any other health care or mental health advice. Always seek the advice of a mental health care professional or physician. The content on this blog is not meant to and does not substitute for professional medical advice, diagnosis, or treatment.