Advocacy for the Well-Being of Dementia Residents in Memory Care

In 2018, Virginia added regulation 22VAC40-73-830 under Standards for Licensed Assisted Living Facilities that established a legally recognized “Resident Council”. For those in memory care, a Resident Council becomes, by proxy, a council of family members or legal guardians.  The council gives a voice to themselves and their loved ones, and facilities must respond to the concerns of the Resident (and Family) Council.

If you have a loved one who has been diagnosed with Alzheimer’s disease or other form of dementia, you already know that it is a condition that can disrupt the entire family. Communication and reasoning become difficult or impossible, and behavioral changes in our loved ones can lead to stress, frustration, and burnout for family and caregivers.

When living at home is no longer practical for those suffering with dementia, many families have made the difficult (and costly) decision to move their loved one into a “specialized assisted living facility” called Memory Care.

This type of move tends to be a last resort, as pulling a loved one away from his/her home and family into unfamiliar surroundings with unknown faces and voices can be confusing and traumatic. In most cases, it is not a move they would have chosen themselves. As a family member or legal guardian, the decision we are making on behalf of our loved one can lead to a rollercoaster of emotions and second guessing.

Our loved ones have had many life experiences. They may have raised children, run a company, served in the military, been an amazing cook, sang in the choir, played chess, given to charities, or run marathons. It’s difficult for us to see them lose these identities and skills, and we want their new “caregivers” to treat them as the valuable contributors to society they once were. They may still love music, desire social connections, and want to express themselves in their own unique way. We still want them to be honored for their humanity and contributors to society. Most importantly, they are doing their best, and they deserve to be treated with dignity and respect.

So, we do our research, visit different memory care facilities, and move our loved one into a community that seems like it will be a good choice. Once moved in, we visit, we observe, and many of us continue to show up to help. Over time, we may be satisfied that our loved one’s experience is going well. But we may find instead that the facility we chose could be better or is not providing the type of care we were expecting. If the latter, some of us consider moving our loved one somewhere else. But moving a loved one to a different facility creates a host of other concerns, not the least of which is wondering if any facility is going to provide a level of care that matches our personal standards and expectations.

How a Resident (Family) Council Can Help

Chances are, you’re not the only one who has some good ideas for better care and services at the facility or is disappointed with the quality of care being given. The good news is that families are not necessarily stuck with the policies and practices at the current facility or of its staff.

Across the country, an empowering initiative has been gaining momentum called Resident-Family Councils. Increasingly, state laws have given rights to residents and families to express concerns and influence policies. Those same laws also assign responsibility to assisted living facilities to respond to the concerns submitted by Resident-Family Councils.

Due to privacy laws (and self-interest), facilities cannot tell you what concerns or issues other residents and families are facing. The only way to know that you are not alone in your thinking or that your loved one is not an unusually difficult resident is to pay attention to what is happening with other residents, and to talk to other family members about shared experiences, concerns, and ideas.

Why Family Input Matters

Family members are often the best judges for the care of their loved ones and can offer insights, preferences, and feedback that are necessary for personalizing their care. Resident-Family Councils serve as a direct channel of communication between residents, caregivers, and administrators. This open dialogue can help ensure that the care provided is effective and respectful of individual needs and preferences.

These councils can include any family member or legal representative of the resident living with dementia, though not all family members or guardians need to participate. Regardless, the council works to ensure quality of care for all residents.

Resident-Family Councils meet regularly, often monthly or quarterly, to discuss concerns or address unmet needs of their loved ones and other residents. The council then communicates those concerns or ideas to the facility administrator and moves to resolve any concerns and suggest possible solutions.

Types of Concerns

By exercising their rights and actively participating in decision-making, families and residents can have a sense of control over standards of care for ADLs (Activities of Daily Living, such as bathing, grooming, eating, toileting), social activity programs, the broader environment (noise level, use of spaces, lighting), or even the types of foods being offered.  There is no concern that is too small or trivial. Suggestions and requests from family can help affect the mood, behavior, and well-being of everyone living at the facility.

Policy and Facility Improvement

Families can offer constructive feedback on facility policies, training, and environment, helping to shape standards that are sensitive to the needs of residents. Resident-Family input can drive improvement to the facility’s services, with the goal of improving the well-being for all residents.

Regarding “standards”, residents and families should ask for a copy of the facility’s standards of care, company care goals, or other vision/mission statements so that families can know how the facility views itself and provide feedback on how well the facility is accomplishing its own stated goals.

Advocating for Rights and Dignity

Residents, regardless of their cognitive abilities, have rights.  By raising awareness about the rights of dementia residents, councils contribute to creating an environment where residents are treated as respected individuals. All residents have a right to respect, dignity, and value as human beings.

The Virginia Department of Social Services has outlined the “Rights and Responsibilities of Residents of Assisted Living Facilities § 63.2-1808”

Insist on Resident-Centered Care

Resident-Family Councils should insist on a resident-centered approach to care, versus a task-oriented approach adopted by some staff at some facilities. While task-centered activities are critical for a smooth operation (laundry, meals, medications) each person has unique needs, preferences and personality distinctions. Families and guardians can provide insight into the resident’s history, inclinations, and habits, helping the staff provide personalized and meaningful care.

Fostering a Sense of Community

Ideally, the facility environment fosters a sense of belonging and community, not only for the residents but for the friends and family of residents. While the Resident-Family Council is not technically an emotional support group, many families find that the shared experience of caregiving, with its numerous challenges, is understood by the others in the group who are on the same journey.  Being part of the council allows families to connect with each other, share coping strategies, and reduce feelings of isolation and stress.

Ensuring Legal and Ethical Standards

Resident Councils can serve as a check and balance system, ensuring that the facility adheres to legal and ethical standards for the care of residents. The council can provide information for resources outside of the facility (such as the Department of Social Services, regional Ombudsman, or Adult Protective Services) that may feel awkward to ask of the facility administration.  If needed, the family council may help resolve issues between families and the facility administration at the request of the family.

Setting Up a Resident-Family Council

If you are currently part of a Resident-Family council, then you already have a forum for voicing concerns. If you do not have a council set up, you can easily get one started. In Virginia, assisted living law does not mandate the establishment of a Resident-Family Council. However, the law does require that facilities remind residents and families that Council formation is allowed. Furthermore, the regulation states that the “facility shall assist Residents in maintaining the Resident-Family Council, including: scheduling regular meetings, providing space for meetings, and posting notice for meetings”.

You can plan for a first meeting and request that the facility send notice to family members and legal guardians (for whom it has contacts), and physically post a notice announcing the date, time, and location of your first meeting. You can copy the language of the regulation that states the purpose of the meeting is to “work with the administration in improving the quality of life for all Residents, discuss the services offered by the facility, and make recommendations for resolution of identified problems or concerns.”

Final Thoughts

Residents in Memory Care are still living their lives, regardless of their cognitive condition, physical abilities or communication skills. Most of them still smile, hold hands, laugh, and cry. For those who cannot speak, a simple grin or raised eyebrow can tell us that they are still with us.

Resident-Family Councils have the power to affect quality of life. Through active participation, family members and legal guardians can use their collective influence to make a difference so that these lovable and loved people can still have the best life possible.

We must do our best. Reach out to your Resident-Family Council to voice your opinions, concerns, and ideas for the best possible care for our loved ones. And if you’re just getting a Resident-Family Council started, you’re on the path to making a difference!