People can end up in nursing-home and other long-term-care environments for any of several reasons. And residents may run the gamut in terms of their levels of awareness and disability.

When a resident retains his or her reason, then – in principle – he or she can “advocate” for themselves in the sense of communicating their desires and needs to facility administrators and staff. But what about cognitively impaired residents, such as those with Alzheimer’s Disease or some other form of dementia?

Such persons may require additional assistance. And this is where a Family Council can come in.

Long-Term-Care Resident Groups

Residents in long-term-care facilities, and families of people residing in such facilities, have the ability to form groups. These groups are often organized to facilitate discussions focused on resident needs and facility changes that may have to do with quality-of-care and quality-of-life issues.

As it happens, these groups, when formed, have tended to be referred to as “councils.” There are two main types of these councils that may be created: family councils and resident councils.

Resident Councils

The most basic variety of long-term-care group is going to be the resident council.

In general terms, a “resident council” is an association of individuals who live in a particular care facility and who wish to work together for the enhancement of their shared living experience.

When they exist, resident councils are independent of the care facility. To put it another way, the resident councils are not controlled or run by the facility administrators or staff.

I say that this sort of group is the “most basic” because it is natural for facility residents to provide feedback and input that pertains to their living conditions. They are interested in the facility, not simply in a psychological sense, but in an economic sense – that is, they have an interest in the policies and procedures of the relevant facility.

Family Councils

A related type of long-term-care group is the family council. As the name implies, “family councils” are groups organized and run by families (or close friends or representatives) of nursing home residents instead of the residents themselves. These family members then join with other families and speak for residents in advocating for policy and procedure changes that improve daily care and quality of life.

It should be said that nothing prevents residents from joining or participating in family councils.

Relatedly, I note that the point of the family council is not to compete with, replace, or supplant the resident council.

Rather, the point is to offer assistance to residents. And, the focus of this website being what it is – namely, Alzheimer’s Disease – it is important to observe that this assistance is especially necessary and valuable in cases where residents lack the ability to speak for themselves because of cognitive impairment, dementia, or similar conditions. (More on this, below.)

Brief Council-Related Questions and Answers (Q&A)

What Do Councils Do?

Both family and resident councils may bring to light issues surrounding care and living conditions. These may include, without limitation: the availability of food, medical equipment, silverware; the cleanliness of the facility; the functionality of things such as elevators; the reliability of internet access; and so on.

Essentially, any topic that impacts the quality of life of residents is fair game.

Once topics have been discussed, it is up to the individuals in the council as to how to proceed. Many facilities (see further on) are required to provide the council with a go-between or contact so that concerns can be delivered to the administration or staff without delay.

Councils may decide to bring their concerns to the facility orally or in writing – in a small group or via a designated council representative.

The first and preferable route would be to communicate with the facility.

However, if the facility is unreceptive for whatever reason, or if it somehow fails to satisfactorily address the expressed concerns, then councils may contemplate or undertake other actions.

Are Family Councils Only Allowed When Residents Have Dementia?

No. Family councils can be formed in order to support any person residing in a particular long-term-care facility, whether the resident is impaired or not.

However, it’s arguably even more important for a family council to be formed when resident loved ones do have cognitive impairments, since dementia sufferers may be unable to speak for themselves.

What Are Examples of Conditions That May Result in Cognitive Impairments?

Conditions may include: Alzheimer’s Disease, Creutzfeldt-Jakob Disease, Frontotemporal Dementia (Pick’s Disease), Huntington’s Chorea (Huntington’s Disease), Lewy-Body Dementia, Multi-Infarct (or Vascular) Dementia, Parkinson’s Disease, Wernicke-Korsakoff Syndrome, etc.

What If a Resident Has No Living (Or Interested) Family Members?

Residents may give permission to non-family members to participate in family councils on their behalf.[1] If a resident has a cognitive impairment, then things can get a little dicey. If you would like a non-family member to represent your interests in a family council, you may wish to record your wishes in writings prior to the manifestation of any condition that might call in question your mental fitness.

Are Long-Term-Care Facilities (Such as Nursing Homes) Required to Recognize Family Councils?

I will address this question at greater length in a forthcoming post.

But, for now, suffice it to say that Federal regulation (in Title 42 CFR 483.10) states that Medicare/Medicaid-participating nursing homes must recognize family and resident groups when they form.

Further, these facilities have to provide resident and family groups with private meeting spaces, and they need to take reasonable steps (with the approval of the groups) to make residents and family members aware of upcoming meetings in a timely manner.

Additionally, the facility must provide a designated staff person to act as a liaison to the group. This person will be responsible for providing assistance to the group and with delivering (though not necessarily writing) responses to formal requests that result from the group meetings.

Does the Long-Term-Care Facility Have to Respond to Council Requests?

The facility cannot ignore the group or suppress its ability to form. So, in this sense, yes, the facility must provide some sort of reply to a group when it is asked to do so.

This does not mean, however, that the facility is compelled to do precisely what the council requests.

Things are tricky. I will try to explore some of these issues at greater length in a future installment.

Six Characteristics of a Family Council

It may be helpful if I briefly sketch some of the qualities that a family council will have.

Autonomy

Autonomy refers to the fact that the group is self-led. Neither a family council nor a resident council is created or led by facility administrators or staff members. If the facility has started and controls a group, then it is not a family or resident council in the relevant sense – regardless of what the facility calls it.

Facilities are of course free to form their own groups; and residents or families are free to join these facility-created groups if they choose to do so. But the formation of a facility-led group is not a replacement for an autonomous family council, and joining a facility group does not bar a person from joining an autonomous group.

Facility Specificity

There may be groups that support anyone living at any nursing home. However, a family council is relative to a specific facility. The ties that bind the members of a family council have to do with the fact that members all have relatives who live in the same long-term-care facility.

Independence

Independence is an extension of autonomy. The administration does not have claims over the family council. The councils are not dependent upon the facility. Moreover, the council is not considered to be a government program. It is an independent association of families of people living at a particular facility.

Interest

A family council must be made up of a group of people who have an interest in the facility. In this context, “interest” does not simply mean a curiosity. It means there has to be an interest in more of an economic sense. Member families have to have some “stake” in the facility and, going further, in the standards according to which the facility operates.

Openness/Inclusivity

There must be no barrier to entry into the family council other than having a close friend or relative involved in the facility. The council be must inclusive or open in terms of its membership.

Privacy

The group is owed a private space that should be provided by the administration of the facility on the facility grounds. The facility cannot appoint a staff member to “sit in” on the meetings.

Administrators or staff may be invited by the group to attend meetings. But, apart from such an invitation, presumably furnished by a council officer or spokesperson, the group should be allowed to meet privately.

Once again, the facility may endorse or sponsor other, staff-led groups. And these groups may also listen to complaints or solicit feedback from families and residents. But, the existence of such facility-controlled groups does not undermine the ability of residents and families to form their own councils to advance their own interests.

Notes:

[1] Presumably, if there is a conflict, a resident could also revoke a family member’s permissions or otherwise “block” one of his or her family members from participating in a council.