Caregiver Loneliness


We all can feel lonely whether in a crowd or physically alone.  We can enjoy moments of solitude where we seek time alone – by choice. Yet when it’s not by choice we may feel isolated and alone.

Loneliness is a vast topic and comes up regularly. I hear it in support groups and in everyday conversations including caregiver conversations.   When folks are caregivers, loneliness can be frightful. It can be compounded by feelings of loss and grief.  Even with your care recipient right beside you physically – you can feel alone and isolated.  This is especially true when your loved one is living with dementia.  

When Invitations Slow Down

And that’s not all… perhaps like caregiver, Heidi Rome (Island Treasures podcast episode “You Just Have to Love Me: A Mother’s Caregiving Journey”) you have noticed that after the diagnosis people disappeared.  People you thought were good friends, even family members.  Suddenly you no longer hear from them.  Invitations to dinners, activities, or gatherings over the holidays cease.  Heidi reminds us that it’s not that these friends and family are bad people. It’s just that they don’t know how to be around you and your loved one in your new situation.  This certainly can contribute to feelings of isolation – even feeling abandoned or neglected.

The Need for Social Interactions

As a caregiver it may be difficult to leave your care recipient alone. Getting yourself and your loved one ready for an outing or social gathering may be a huge task.  You may feel torn as you want to go. Many factors may be flooding your mind when you consider going out. 

You may wonder how your loved one will respond to the change of scenery (sensory stimulation variants, familiar environment and routine)? Will they be overwhelmed or over stimulated, distressed, confused or rude? Perhaps they’ll act out or maybe experience incontinence?  Will you be able to relax?  Do folks say they’ll help, but back away when faced with the challenges you so readily handle?  You ask, “is it worth it?”

It may not seem worth it and you decide not to go together.  However, you feel you need to go out.  To do so requires finding someone you not only trust but who your care recipient is comfortable with and vice versa.  Ideally this is possible when there’s a trusted friend available.  A friend who has an established relationship with your family member. A friend who is willing to provide respite. If there is no trusted friend, you remain house bound feeling locked-in and isolated.

No wonder caregivers experience loneliness.

Combatting Loneliness

How do we combat caregiver isolation and loneliness?

Social connections can help reduce feelings of loneliness.  Connections with understanding friends, other caregivers and support groups. Online support groups have become more available since the pandemic. They provide opportunities to connect and find comradery… even a place to safely vent. It’s important to find the one right for you.

Learning what resources are available in your community is vital. As you can connect with these resources and perhaps access time away.  Such resources include an adult day program which may provide positive breaks for both you and your loved one.  Connect with a credible agency who will provide a caregiver or volunteer to come and spend time with your loved one.   These options provide the opportunity for you to take a break so you can reconnect with people or activities that feed your soul. Then you may feel less isolated and alone.

When this is not an option – it’s time to get creative.  To stay as connected as possible try squeezing in a phone call with a friend or inviting someone to come and visit – for coffee.  When a friend says “let me know if you need anything” ask them to bring a meal and to stay for the meal.

Other practical suggestions include cracking open books where the characters come alive and provide you with feelings of warmth or escape. Doing an activity you once loved to do – albeit, now as a caregiver you may need to scale it back into a micro version of the activity. If you have a headset you can listen to podcasts or audio books. Ask friends and family to send you cards and letters.  Receiving a note from a friend can help relieve some of the loneliness.   

Finding time for these suggestions may add more tasks to your busy caregiving schedule so it’s time to issue a call to action for those friends and relatives who backed away when you became a caregiver. 

A Call to Action For Non-Caregivers

For the non-caregiver who may feel uncomfortable being with your friend and their loved one because of the changes brought on by illness, it may be helpful to address why you feel uncomfortable. Are you experiencing fear and uncertainty of how to act around them?  If so, at the very least keep in contact.  Be honest with your friend. Send a ‘thinking of you’ card, issue an invitation, ask how you can support them, and learn about the disease process of your friend’s care recipient.  Think how you would feel if this happened to you.

It doesn’t have to take much to bring brightness into a lonely person’s world.  It may bring you joy as well.  By lessening your friend’s loneliness, you may be improving their health.  The health risks of loneliness are real and can be harsh. 

Health Risks of Loneliness

Check out these risks identified by the Centers for Disease Control and Prevention[1].  The CDC provides findings from recent studies by National Academies of Sciences, Engineering, and Medicine (2020).[2]

  • Social isolation significantly increased a person’s risk of premature death from all causes, a risk that may rival those of smoking, obesity, and physical inactivity.
  • Social isolation was associated with about a 50% increased risk of dementia.
  • Poor social relationships (characterized by social isolation or loneliness) was associated with a 29% increased risk of heart disease and a 32% increased risk of stroke.
  • Loneliness among heart failure patients was associated with a nearly 4 times increased risk of death, 68% increased risk of hospitalization, and 57% increased risk of emergency department visits.
  • And finally, loneliness was associated with higher rates of depression, anxiety, and suicide.

Remember, loneliness can affect all of us – caregivers or not.  For non-caregivers, remember the call to action.  When you think about a caregiver, put those thoughts into action. Doing so will help to combat their feelings of loneliness and isolation and improve their overall wellbeing.

[1] Centers for Disease Control and Prevention: CDC 24/7: Saving Lives, Protecting People: Alzheimer’s Disease and Healthy Aging. 2021 Loneliness and Social Isolation Linked to Serious Health Conditions

[2] National Academies of Sciences, Engineering, and Medicine. 2020. Social Isolation and Loneliness in Older Adults: Opportunities for the Health Care System. Washington, DC: The National Academies Press.

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This Post Has 2 Comments

  1. Tracy Crump

    Next to exhaustion, loneliness is the most common complaint of caregivers, in my opinion. Lots of good information here, Alison.

  2. Alison van Schie

    Thank you Tracy. Caregiving certainly can deplete a caregiver’s energy with the complex and continuous demands leading to exhaustion…. and ultimately burn-out.

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