Jennifer Axelson, LCSW, CLCP, MSCC, CCM
Martha Kern


Nursing homes, memory care facilities and assisted living communities are designed to address the needs of a homogenous community – persons living with particular impairments and who require particular forms of care, often related to age – in a group environment where safety and efficiency can be emphasized.  It is a sensible concept, and one that has worked for decades.

Disrupting this care model somewhat is growth in the incidence of young residents occupying beds alongside much older patients.  The National Center for Health Statistics reports that adults aged 65 to 74 represented 13% of nursing home residents in 2000 and by 2013, the percentage had risen to almost 15%.

The under-65 population in facilities is also growing. The Associated Press reported that Montgomery County in Pennsylvania saw the percentage of under-65 residents in nursing homes go from five percent in 2000 to 18% in 2016.

The Elements Driving the Trend
Younger residents occupying nursing homes and other communal facilities arrive there for a variety of reasons.  Most are difficult to manage in the community due to medical or behavioral acuity, and may be contending with:

  • Early onset Alzheimer’s disease
  • Mental illness
  • Developmental disability
  • Neuromuscular disease
  • Physical disability stemming from injury
  • Dual diagnosis of mental illness and medical challenges

Many families offer care to their loved ones to make home-based life possible.  They do so at tremendous personal cost, often having to adapt their homes, give up jobs and make a host of personal sacrifices.  When parents are themselves ill or unable to surrender an income stream, disabled or impaired family members find their only viable option is to reside in a facility.  Medicaid, when applicable, has an “institutional bias” with available funding for nursing homes but much, much less for home-based care.

It’s also true that not every condition or impairment can be safely managed at home.  Many youthful facility residents received care at home initially, but because of complications or a worsening of their condition and/or behaviors, they now need to receive care in an institutional environment.

We have worked with many families who successfully rendered care to a disabled or impaired loved one at home until this individual’s parents became too aged to provide the needed support.  Siblings are frequently in the midst of raising families and pursuing careers and are just not in a position to take on the responsibility of a brother or sister whose needs may be significant.  In situations like these, placement is often the only way forward.

Challenges for Facilities
Sometimes, younger residents exhibit behavior issues related to their illnesses and/or stemming from the depression their predicament inspires – their lives are much smaller than they might be in the community, and they may act out as a result (i.e. calling the police to report their rights are being violated).  Those who can go out with friends in the community may stay out late, consume alcohol and otherwise behave like young adults.  Facilities that are dominantly occupied by seniors are ill-equipped to handle such behaviors.

Residents with early onset Alzheimer’s represent a particular risk when it comes to elopement.  Their youth, relative to other residents of a secure memory environment, creates the impression they are visitors and they are sometimes able to slip out the door with people leaving the building.  If they are prone to hitting or biting, it can be difficult to protect physically frail residents from these more able-bodied individuals when misunderstandings and disputes erupt.

Many facilities attempt to house younger residents together in the same part of the building to help allay loneliness and encourage the development of social bonds. This practice can also enable the emergence of specialized programming and staff dedicated to this unique population. Flexible meal schedules may be necessary for young residents who like to keep their own hours. Internet access is essential, and the addition of vocational and educational opportunities helps engage young residents and foster in them a sense of purpose.

Challenges for Residents
While younger residents may share ambulation issues or dietary restrictions with their older neighbors in a facility, very often they have little else in common.  They don’t “belong” in a community full of seniors and their emotional and social needs are markedly different from the people with whom they share a dinner table.  A young man in his 20s, for instance, who has been catastrophically injured in an accident, has not lost his affinity for loud music, girlfriends and detailed discussions about football.

Youthful occupants of facilities complain about a lack of privacy, loneliness, unappealing food and activities that are designed for seniors (i.e. Bingo).  Overall, they may experience a lack of connection with those in the immediate environment due to generational and age-related differences.  They may well be surrounded by people for whom involved conversation is difficult due to hearing or cognitive deficits, and feelings of social isolation may result.

Professional Help
The engagement of a professional care manager to assess the individual and their residential circumstances and apply their knowledge of resources to the problem may help remedy a situation that is simply not working.  There are group homes and other environments expressly intended for younger residents and, though waiting lists can be long, a professional may be able to uncover new options.

Professional care managers are often intimately familiar with facilities and can share information about placement options where there are perhaps other younger residents and programs/activities to address their specific needs and issues.

Facilities and families alike contact us when a poor fit exists between resident and environment.  Knowledge of options and the insight garnered from years of field-based practice can make a care manager well equipped to find a solution.  On especially complex placements or transfers, facilities who would normally deny a resident due to a problematic history might be induced to accept them if a care manager will remain involved to help solve problems.

Care managers can also help with socialization, outings into the community, and transport to visit family, as financial resources allow, to enhance quality of life.  A placement that is necessary but not thoroughly embraced by the resident can be made more tolerable with outside activities, one-to-one attention, and time devoted to their individual interests and issues.

Not every disabled individual can safely and successfully reside in the community, but expert eyes on the situation may lead to an initial placement – or an alternative placement – that meets both care and social needs, and improves quality of life for the resident.

 

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