Experiences of Caregivers of People with Disabilities and Older Adults in Long-Term Care Facilities

Caregivers play a central role in supporting individuals with disabilities as well as middle-aged and older adults living in long-term care facilities. Their experiences are often marked by complex challenges but also by personal insights. The study, available under PMC11749321, sheds light on the perspectives of these caregivers and illustrates how caregiving experiences unfold both emotionally and practically.

Key Challenges

Emotional Strain

  • Caregivers report feelings of guilt, particularly when they have had to place their loved ones in a care facility. This decision is often perceived as a “last resort.”
  • The loss of daily caregiving responsibilities leads some caregivers to feel a sense of loss of control.

“The guilt I feel for putting my father in a nursing home stays with me every day. At the same time, I’m grateful that he is safe there.”

Communication with Care Staff

  • Many caregivers find interactions with care staff crucial to their satisfaction. A lack of transparent communication can lead to mistrust.
  • At the same time, there is strong appreciation for dedicated care workers.

“I often feel excluded when it comes to decisions about my husband’s care. I want to be involved because I know him best.”

Practical Challenges

  • Organising visits and coordinating with the care facility often involves logistical difficulties.
  • Some caregivers feel additionally burdened by bureaucratic hurdles.

Positive Aspects of the Caregiving Experience

Relief Through Professional Support

  • Caregivers report feeling relieved by the placement of their loved ones in a long-term care facility, allowing them to focus on other aspects of their lives.
  • The safety and medical care provided by the facilities are seen as major benefits.

“The care facility has lifted a burden off my shoulders. Now I can enjoy the time I spend with my mother without being constantly exhausted.”

Quality Time Together

  • Visits to the facility allow caregivers to focus on their emotional connection without being overwhelmed by daily caregiving responsibilities.

Learning and Growth

  • Many caregivers share that their caregiving experiences have taught them new skills and insights that enrich their lives.

Recommendations for Improving Experiences

Greater Involvement of Caregivers

  • Care facilities should actively involve caregivers in decision-making processes and provide regular updates on the residents’ conditions.

“It would be helpful if the care facility offered more flexible visiting hours. I work full-time and can often only come in the evenings.”

Emotional Support

  • Psychological counselling and support groups could help caregivers better cope with emotional strain.

Flexible Visiting Hours

  • Adjusting visiting regulations could help caregivers maintain regular contact with their loved ones.

Reducing Bureaucratic Burdens

  • Simplifying administrative processes would make daily life easier for caregivers.

Conclusion

The experiences of caregivers in long-term care facilities are multifaceted, ranging from feelings of burden to relief. Better support from care facilities, both emotionally and organisationally, could significantly improve caregivers’ experiences. The study provides valuable insights and recommendations for further optimising care and support in long-term care facilities.

For more details, you can find the complete study at the following link: PMC11749321.

Reflection Questions

  1. What challenges currently weigh most heavily on you in your role as a caregiver, and what support would you need to overcome them?

  1. How can you make the time you spend with your loved one more enriching for both of you?

  1. In which areas could you allow yourself more relief to protect your health and well-being?

Your Opinion?

Author
Dr. Karl-Maria de Molina
CEO & Co-Founder ThinkSimple.io
Project Manager and Chairman of Family Valued

Family Valued

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