Speaking Up or Staying Silent? The Reality of Family Advocacy in Long-Term Care

Families play a vital role in the well-being, dignity, and quality of life of loved ones living in long-term care. They often know the person best, notice subtle changes, and serve as important advocates when concerns arise.

Yet many families hesitate to voice concerns, ask difficult questions, or report problems. 

Research suggests that one significant reason is the fear of retaliation, or the fear that speaking up could negatively affect their loved one’s care, relationships with staff, or overall experience within the care home.

While retaliation is not universal and should never be assumed, studies suggest that the fear itself is real and can significantly influence whether families choose to advocate for their loved ones.

 

Understanding the Fear

When a loved one resides in a care home, families entrust others with responsibilities that were once their own. Residents often depend on staff for assistance with meals, personal care, medications, comfort, mobility, and social engagement.

This dependency can create a significant power imbalance.

Family members may worry:

Will staff see me as difficult if I raise concerns?

Will my loved one receive the same quality of care afterward?

Will relationships become strained?

Is it safer to stay quiet?

 

Recognizing Vulnerability in Care Settings

When one person’s well-being depends on another for care, support, comfort, or safety, vulnerability is created. 

Whether intentional or not, that dependency can leave residents and families feeling as though they must be careful not to upset those providing care. Some may begin to feel they are asking for too much when they raise concerns or request assistance, as though quality care is a favour rather than a responsibility. 

Yet receiving competent, compassionate, and respectful care is not an unreasonable expectation – it is the very purpose of professional caregiving. 

Families have the right to ask questions, seek clarification, and advocate for their loved ones without fear of negative consequences. 

At the same time, professional caregivers and leaders must recognize the often unspoken power imbalance within care relationships. 

 A cornerstone of person-centred care is creating an environment where people feel as safe voicing concerns as they do sharing praise.

Creating an environment where residents and families feel heard, respected, and secure is essential to preserving dignity, trust, and psychological safety for everyone involved.

 

What the Research Says

Research in long-term care has found that residents and families often carefully manage their interactions with staff to preserve positive relationships and avoid conflict (Baumbusch & Phinney, 2014).

Rather than openly expressing concerns, some families choose to monitor situations quietly, hoping problems will resolve without confrontation.

Fear of retaliation is not merely theoretical.

A recent study examining complaint investigations across U.S. nursing homes identified reports of fear of retaliation, perceived retaliation, and instances where retaliation was substantiated. Reported experiences included intimidation, delayed responses, emotional mistreatment, and concerns about worsening care following complaints.

 

The Impact on Residents and Families

Fear can have unintended consequences.

When concerns are not raised:

• Opportunities to improve care may be missed.
• Small issues can become larger problems.
• Families may experience increased stress, anxiety, and helplessness.
• And perhaps, the most devastating of all – the person with dementia may lose an advocate who knows them best.

Advocacy is not merely about addressing problems. It is also about ensuring that a person’s preferences, routines, values, and identity continue to be recognized and respected. 

Most importantly, healthcare professionals can greatly benefit from the lived knowledge and insight families bring, as they often hold a deeper understanding of the person’s history, personality, and subtle changes over time that can meaningfully support more personalized and responsive care.

 

The Importance of Psychological Safety

Healthy care environments encourage open communication, where questions, concerns, and observations are welcomed without hesitation or fear of judgment. In these environments, dialogue between families and care teams is viewed as a partnership, recognizing that each perspective adds valuable insight into the resident’s well-being.

Families should feel comfortable asking questions such as:

Can you help me understand this care decision?

I’ve noticed a change in my loved one. What are your observations?

How can we work together to support them?

Research suggests that collaborative relationships between staff and families are associated with better communication, greater trust, and improved quality of life for residents (Puurveen et al., 2022).

When families feel heard and respected, they are more likely to participate constructively in care planning and problem-solving.

 

A Compassionate Approach to Advocacy

From our observations, most families do not raise concerns because they wish to complain. They do so because they care deeply about the person they love.  Likewise, most care providers enter the profession because they genuinely want to help others.

Recognizing these shared intentions can create space for meaningful dialogue.

Families should never feel they must choose between protecting a relationship and advocating for a loved one. Advocacy is not opposition. At its best, it is a collaborative effort to ensure that each person receives care that is safe, respectful, and person-centered.

True person-centred care is not only about listening to the resident’s voice. It is also about ensuring that families feel safe, respected, and empowered to speak when their voices need support.

Whether you are a family member trying to advocate for a loved one and unsure how to navigate difficult conversations, or a care provider, manager, or healthcare team member seeking to strengthen communication, rebuild trust, or enhance collaboration with families, support is available to help bridge these gaps. At Dementia Solutions, we offer guidance, education, and capacity-building to help create safer, more open, and more person-centred relationships in care.

 

At Dementia Solutions, we’ve made it our mission to demystify dementia behaviour and continue to explore person-centred, creative, non-pharmacological solutions to manage dementia-related behaviours. We believe that awareness creation and skill-building through education is the most effective and powerful tool we have to promote and maintain the well-being of both the person with dementia and their caregiver.