Assessing the Caregiver and Working with Families

Attention to caregiver wellness is essential for reducing distress in the dyad or family. Some caregivers benefit from simple motivation and encouragement, whereas others require more structured support or even psychiatric treatment. Every caregiver benefits from a supportive and empathic relationship with a clinician.

Role of the medical provider to the caregiver:

  • Model positivity, optimism, proactive attitude, and humor.

  • Offer specific suggestions when possible. Patients do not want to hear vague suggestions to “get more rest.”

  • Ask to describe a typical day in detail in order to identify areas for intervention.

  • Ask them to identify specific pressure points or signs of burden. Encourage them to ask for additional family support.

  • Offer group and respite services if appropriate.

  • Provide education about the illness as it comes up. Like all things in geriatrics, this is best done “low and slow” rather than bombarding a caregiver with information.

General reminders and guidelines that serve as a template in conversations with patients: 

  • There is no perfectly fair and equal division of family care responsibility – although many family members will offer opinions.

  • Few families have the luxury of caring for one person at a time.

  • Elders are rarely manipulative and demanding, but likely have real unmet needs.

  • There is no right or ideal place to offer family care.

  • Successful family caregivers are flexible.

  • Many situations are beyond one’s control. Focus on managing stress instead.

  • Even in ideal situations, contingency plans are needed. The illness constantly evolves and progresses. 

Key messages for family caregivers: 

  • Be willing to listen to the older adult, but know that you cannot fix everything.

  • You are living with a situation you did not create. Choices are limited by factors beyond your control. Seek options that are good enough in the moment.

  • You can only do what seems best at the time. Doubts are inevitable.

  • Find someone with whom you can be brutally honest. Express your doubts and frustration and move on.

  • The older adult is not unhappy or upset because of something you have done. He or she is living with unwanted dependency. Sick people often take out frustration on those close to them.

  • Be willing to compromise and allow time for yourself. Think twice before giving up the job, club, or church group. Make realistic commitments that avoid always, never, or forever.

  • Find ways to let your loved one help you. He or she needs to feel purposeful and loved.

  • Take time to celebrate small victories when things go well.

General reminders for caregivers about interacting with loved ones with dementia:

  • Understand that the patient behaviors are not intentional.

  • Learn how to relax the rules (e.g. baths do not have to happen daily)

  • There is no right/wrong in activities as long as the patient and caregiver are safe.

  • Go along with the patient’s view of what is true and avoid arguing or trying to reason or convince.

Additional resources

Select references

  • Adelman RD, Tmanova LL, Delgado D, et al. Caregiver burden: a clinical review. JAMA. 2014;311(10):1052-59.

  • Steffens DC, Blazer DG, Thakur ME. Textbook of Geriatric Psychiatry, 5th ed. American Psychiatric Publishing. 2015. Washington, DC.