The Center for Brain/Mind Medicine > Support & Education

Caregiver Wellness

Self-Care vs. Wellness

When you think of the term “self-care,” what comes to mind?  Do you conjure up images of massages or pedicures?  Do you feel dread, frustration, or even resistance?  Do you roll your eyes at the idea of having one more thing to do in your day?  The term “self-care” is often thought of as a one-time treat or activity that offers momentary stress relief.  But unless you put a plan in place to regularly practice self-care, it may only happen occasionally, or only when you’re already stressed. 

At the Center for Brain/Mind Medicine, we prefer the term “wellness.”  Wellness is not just about being happy, but about maximizing well-being in all aspects of life: emotional, financial, environmental, occupational, physical, social, intellectual, and spiritual.

Why Is Tending to My Own Wellness Important as a Dementia Caregiver?

Family caregivers of people with dementia, often called “invisible second patients,” are essential to the quality of life and well-being of the person with dementia, but multiple studies show dementia caregivers experience:

  • Increased risk of high blood pressure, elevated levels of stress hormones, impaired immune function, slow wound healing, and coronary heart disease.
  • Higher rates of depression, anxiety, and social isolation compared to others their age.
  • More caregiver burnout than those caring for people with other chronic or terminal illnesses. 

Also, the more burden a dementia caregiver experiences, the more difficulty they have managing challenging dementia behaviors (aggression, self-harm, wandering) that result from disease progression. 

These are but a few of the risks of caregiver burden and burnout.  You can lessen these risks by incorporating YOUR wellness needs into the dementia journey.  You didn’t choose to have dementia in your life, but neither did your person.  Your life may not look they way you want it to or the way you imagined at this stage, but you can attend to your own wellness to make your life better, even now. 

We know that one of the big challenges caregivers face is finding the time and energy to get everything done in a day.  Often, you may find that your person’s care needs take priority, so the first step is to make your needs a high priority too.

The Wellness Wheel

Do you feel like a hamster on a wheel, spinning and spinning and getting nowhere fast?  If you’re feeling overwhelmed and unable to pinpoint the source, using a Wellness Wheel can help you gain traction and clarity about what aspects of your life need extra attention.  We understand that this may be easier said than done.  This framework is an invitation to explore your individual needs and values, with the ultimate goal of improving balance between your needs and the needs of your person with dementia. 

 

Image credit: Greens N Goodness

How to Use the Wellness Wheel

Take the Wellness Wheel for a spin.  There are no set rules for using this wheel, so you have a lot of room for creativity in making it work for you.  As you explore the wheel, you’ll get a clearer picture of where you feel confident and fulfilled, and where there are imbalances and opportunities for change.  After using the wheel to assess, think about where change is possible.  Taking it all on at once can lead to feeling overwhelmed, if not helpless.  Use the wheel to focus on one area at a time.  Just as you break down large tasks into smaller steps for your person, use the same approach with yourself.  Small changes are easier to maintain and can be building blocks for larger changes.

Emotional:

Psychological well-being, our ability to manage the challenges of life and to feel fulfilled

Caregiver Considerations:

  • Grief, depression, isolation, stress, and anxiety are common issues for caregivers.

You Might Try:

  • Getting a therapist
  • Joining a support group
  • Learning stress-management skills
  • Asking for help
  • Practicing mindfulness exercises

Physical:

Taking steps to find healthy habits that can support overall wellness–nutrition, exercise, and sleep

Caregiver Considerations:

  • The caregiver role can be physically taxing as your person needs more and more physical help while your own body is aging.
  • Sleep disruption may occur as a result of dementia or your own stress/anxieties.
  • As stress increases, you may engage in unhealthy coping strategies–eating comfort foods, drinking too much alcohol, or not exercising.

You Might Try:

  • Prioritizing your own medical health appointments and engaging in preventive medical and dental care
  • Aiming to move your body daily–you may also do this with your person 
  • Fueling your body with proper nutrition and monitoring your intake of alcohol and other substances

Social:

Creating and sustaining healthy, supportive relationships; connecting with others; belonging to a community

Caregiver Considerations:

  • Whether you’re a spouse, child, family member, or friend, as a caregiver your relationship with your person has changed. 
  • The things you once got from this relationship may be gained in part from other relationships. 
  • Loneliness and isolation can be common experiences for caregivers. 

    You Might Try:

    • Learning to connect with your person with dementia in new ways as the disease changes their abilities 
    • Trying to maintain or build connections with others 
    • Sharing what you need from others 
    • Joining a support group for camaraderie and resources

    Environment:

    Living in harmony with natural and built spaces, enjoying your surroundings, modifying them to suit you, and caring for the earth

     

    Caregiver Considerations:

    • You may have taken on added household chores/responsibilities. 
    • Changes may be needed or new equipment added to make the home safer for your person.

    You Might Try:

    • Delegating tasks to other family members and friends, or hiring out
    • Adjusting to or letting go of your home looking a certain way while your person needs care
    • Getting a home safety evaluation periodically to ensure the environment is safe for you and your person 
    • Designating a space/place in your home you can call your own, even a shelf or a corner 
    • Decluttering your space

    Occupational:

    Finding work that aligns with your personal values or goals; your sense of satisfaction from work

     

    Caregiver Considerations:

    • Consider your caregiver “job description.”  You didn’t choose this role.  How does it align with what’s important to you and what you value?
    • How can you balance necessary paid employment with your caregiver job?

    You Might Try:

    • Learning about the Family and Medical Leave Act (FMLA), reasonable accommodations, and understanding from management if you’re employed
    • Asking if your job serves as a healthy outlet from your caregiver role or is a burden
    • Accessing training–an in-person or online program as seen here
    • Exploring respite care options and/or hiring regular care 

    Financial:

    Our degree of contentment with our financial resources, sense of security and understanding how to manage expenses

     

    Caregiver considerations:

    • You may be managing finances for the first time or assuming the responsibility for another’s finances in addition to your own. 
    • You may experience a decrease in income or increase in expenses because of dementia.

    You Might Try:

    • Taking steps to plan for the future by establishing Advance Directives.
    • Meeting with a financial or estate planner: this can help you in working toward sustaining the cost of hired care over the disease course.
    • Reaching out to your local Elder Services organization to explore financial assistance with care

    Intellectual:

    Our creative outlets, ability to take on challenges that expand our understanding, knowledge, and skills

     

    Caregiver Considerations:

    • Remember that you’re constantly learning new things and acquiring new skills as your caregiver role changes. 
    • Mental stimulation improves concentration and memory.

    You Might Try:

    • Staying curious and engaging in learning activities, hobbies, or skills 
    • Reading for pleasure
    • Joining a club or interest group
    • Enjoying word games or puzzles 
    • Learning time management skills to adjust your workload

    Spiritual:

    Sense of connectedness in the world or the ability to feel purposeful and attribute meaning to life; the process of understanding beliefs, values, and ethics that guide your life 

     

    Caregiver Considerations:

    • Your faith or spirituality may be challenged in the face of this life-altering diagnosis and unwanted change in your life course.
    • Alternatively, this role may offer a degree of fulfilled purpose or reciprocity.

    You Might Try:

    • Journaling
    • Meditation
    • Finding time to connect with nature and/or your spiritual base or community

    Time & Energy

    If you ask a caregiver what they need, they will probably say, “more time and more energy.”  The burden of caregiving is unavoidable and often overwhelming.  There is no “silver bullet” to take that away—it’s inevitable if you are a caregiver of someone with dementia. 

    Although the strain of caregiving cannot be eliminated, we believe it can be lessened.  We hope this approach can be useful, along with other kinds of support, like asking a family member or friend or hiring help, to reinforce or bolster what you already have in place.