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Practical Insights for Busy Caregivers

When friends drift away: staving off loneliness when caring for someone with dementia


December 10, 2018, by Nira Rittenberg

Social isolation is not something that most caregivers think about when they first set sail on the difficult caregiving journey. 
Research shows that caregivers are at risk of being lonely. That’s because many friends, family members and other community contacts pull back and some ultimately disappear when they are faced with a new dementia diagnosis and the reality of the situation.
The loneliness that caregivers feel is very painful and often brings another whole scope of pain to the losses they are already suffering. 
Furthermore, research has proven that loneliness is correlated with a higher risk of developing dementia, meaning that caregivers are themselves susceptible to cognitive decline unless they find ways to stay socially connected. 
I hear people say about friends/contacts: “They don’t want to be with us” or that they’re “embarrassed by my husband’s behaviour.” This may be true, but it’s still critical to nurture and maintain social connections for both your health and the health of the person you’re caring for. 
So, how can you do this? Here are some tips that may help:  
  • Pick the people you feel you can connect with. You may have a sense of who those people are. Having said that, sometimes there are positive and negative surprises.
  • Don’t assume people have information. Be an ambassador and share information about the illness. Without information, people can’t understand you or the needs you may have. Yes, they may have had a grandmother with dementia, but do they really know what it entails?
  • Be honest. Most people don’t really understand the impact of dementia on caregivers. Explain what it really means and what your life is like.  
  • Share the story. It is okay to be vulnerable, but don’t leave it at that. Explain what is going on in a real way.
  • Ask for help. Some people don’t know where to start, and sometimes a small concrete task can build a foundation for connection. Ask them to come over for an hour while you run to the doctor or pick up a prescription. It may build a bond. 
  • Don’t expect them to fully “understand.” People won’t “understand” like you do, but if they realize that you need them, that is okay. Some caregivers expect people to really “get it.” That may be unrealistic.
  • Speak about your fears. Choose the few close friends you can trust to say that you are worried about being isolated. Remind them that you need their help.
  • Set up opportunities. Although an effort, it is worth setting up a regular dinner or coffee event and have people to your place. It may be easier than going out.
  • Caregivers understand caregivers. If the old bonds are not working so well, develop new ones. There are groups, supports and opportunities to meet other caregivers. 
If none of this is working, seek professional support. It’s critical not to do the caregiving job alone!
Nira Rittenberg is an occupational therapist in private practice who specializes in geriatrics and dementia care.
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