Guidelines for Conduct for Family Care Providers
In the journey of caring for loved ones with dementia, family caregivers in the US are advised to adhere to a code of ethics that emphasizes respect, compassion, and flexibility in defining family roles. This approach, rooted in the lived experiences of experienced caregivers, recognizes that caregiving extends beyond traditional nuclear family members to include friends, neighbors, and other nontraditional caregivers who share responsibilities based on personal bonds rather than solely legal or biological ties.
- Broadening the Definition of Family and Caregiving Obligations
Caregivers should acknowledge and respect the contributions of extended family and chosen community members, reflecting the reality that caregiving is a collective, community-based effort rather than restricted to immediate family alone.
- Respecting Dignity and Autonomy
Caregivers are encouraged to support the autonomy of the dementia-affected individual as much as possible, balancing safety with respect for personal choice, thereby preserving their dignity throughout the progression of dementia.
- Compassion and Patience
Ethical caregiving involves empathy toward the cognitive and emotional challenges faced by the person with dementia, maintaining patience and understanding in interactions.
- Self-care and Seeking Support
Experienced caregivers emphasize the importance of maintaining one’s own well-being, accessing training, peer support, respite care, or coaching to sustain the caregiving role effectively and ethically.
- Collaboration and Community Engagement
Encouraging interprofessional collaboration and community involvement in caregiving decisions and support mechanisms ensures comprehensive and age-friendly care that aligns with current best practices.
While there is no single formally codified “code of ethics” universally adopted for family caregivers, these principles reflect a consensus in the caregiving community based on recent research and support program guidance. Family caregivers should drive the person they are caring for to the place of worship if they wish to pray, respecting their current religious beliefs. They should also ask for the opinions and involve the person they are caring for in both important and less important decisions.
In the early and middle stages of dementia, family caregivers should not treat the dementia-affected person like a child. They should involve the person they are caring for in decision-making, even in the early and middle stages of dementia. However, as dementia progresses, family caregivers may have to make all decisions for the person in the later stages.
In difficult moments, it is crucial for family caregivers not to harm the person they are caring for. Developing a code of ethics for family caregivers can benefit the dementia-affected person during tough times. Family caregivers should respect the individual rights of the person they are caring for, even when their choices may not align with their own preferences.
Lastly, it is vital to maintain a committed relationship with the dementia-affected person. Recall good memories with your loved one to maintain a positive mindset. Other family members may not be able to invest as much time in caregiving, but should be kept informed.
[1] University of Michigan study on redefining caregiving ethics around inclusivity, respect, and flexible family roles in dementia care. [2] VA programs emphasizing the practical implementation of ethical principles through skills training and caregiver support services. [3] Emphasis on patient-centered care and caregiver well-being in VA Caregiver Support Programs.
- Recognizing the significance of inclusivity and flexibility in family roles, caregivers can redefine their ethics to account for the involvement of not only immediate family members but also friends, neighbors, and other supportive members in the caregiving process, as shown by a study from the University of Michigan.
- In the context of dementia care, it is essential for caregivers to prioritize the autonomy of the affected individual, even in the later stages, as much as possible while ensuring safety, thus preserving their dignity and respecting their personal choices.
- Following an ethical approach to caregiving involves fostering compassion, patience, and empathy towards the cognitive and emotional challenges experienced by individuals with dementia, creating a nurturing and supportive environment for both the caregiver and the affected individual.
- The integration of interprofessional collaboration, community involvement, and various support services such as training, peer support, respite care, and coaching can go a long way in ensuring effective and ethical caregiving, which ultimately aligns with current health-and-wellness, family-health, and mental-health best practices, as demonstrated by VA programs.
