Some of the ugly things about living at a CCRC.
It’s not all a bed of roses
CCRC marketers may disclose policies and procedures, but they don’t warn about practices and procedures that could sharply change in the resident’s future years, such as when they will encounter dining rooms segregated by age and mobility, restrictions on roaming around campus, and other, perhaps costly and painful lifestyle changes due to health issues. Before deciding to move to a CCRC, you need to ask a lot of questions, not only of marketing agents but of current residents in all stages of care.
Financial
Sometimes CCRCs, especially the for-profit ones, put profits above all else. That’s why you should analyze the financial reports of a CCRC you are interested in before signing a contract.
For example, a CCRC in California was sued for transferring millions of dollars in refundable entrance fees from the retirement community itself to its corporate parent in Chicago, jeopardizing the financial security of the residents, and overcharging the residents by improperly allocating tax assets, earthquake insurance, and marketing costs to operating expenses and representing the charges as inflated monthly fees. The suit started in 2014 and is still ongoing.
Although it doesn’t happen often, when CCRCs file for bankruptcy, it can possibly cost residents. Here are some examples of failed CCRCs:
A more recent CCRC with financial problems is Aldersgate in Charlotte, NC, a large life plan community that has been in operation since 1948. If you look at their website, it seems like a dream retirement community with no major problems, but that is not the case. Aldersgate is in deep trouble but while under state supervision is making a comeback without the residents losing a lot of money.
Extra costs
Due to the high cost of living in a CCRC, residents have been moving in who are older and frailer. These older independent-living residents may start out in independent living but quickly need to move into costlier higher levels of care. This trend toward a higher entry age helped convince the industry to change its name from Continuing Care Retirement Community to Life Plan Community to attract younger residents.
Disease
Infectious diseases can spread rapidly in large groups of people who are confined to a relatively small area, such as CCRCs. In these types of situations, everyone is breathing the same air, touching the same things, eating the same food, and generally in close contact with each other all the time. Since CCRCs have hundreds of employees who come and go daily and have frequent contact with residents, infectious disease control among residents must be an important consideration.
Legionellosis is a respiratory infection caused by Legionella bacteria; the infection can manifest as either Legionnaires disease or Pontiac fever. Legionnaires disease is a common form of severe pneumonia requiring hospitalization, whereas Pontiac fever is a milder, influenza-like illness that generally resolves on its own. Among those who develop Legionnaires disease, about 10% will die of their illness. This case fatality rate tends to be higher among patients with healthcare-associated Legionnaires disease.
Legionnaires disease outbreaks have been rising and many of these cases have been in retirement facilities. In the summer of 2013, the Wesley Ridge Retirement Community in Reynoldsburg, Ohio, experienced the largest and deadliest Legionnaires disease outbreak in state history. The independent living and assisted living facility saw six people die and another 33 become seriously ill. The victims ranged in age from 63 to 99 and included residents, visitors, and one employee. Despite these outbreaks garnering media attention, Legionnaires disease continues to be underdiagnosed and thus unreported.
As with all senior living communities, the COVID-19 pandemic of 2020 affected CCRCs. However, due to their strict implementation of federal, state, and local guidelines, the effect was limited. No CCRC wanted to be the first with one with an outbreak of the virus. Smaller facilities that offered only assisted living or skilled nursing did not fare as well. Although all the restrictions were annoying at times, most CCRC residents felt they were safer living in a CCRC than they would have at their prior places of residence.
Couples being separated
Couples living in independent living units may be separated if one is still healthy and the other needs a higher level of care. This not only causes emotional stress, but it is also an added cost since the couple needs to pay for the independent living of one, at a single-person fee, and the fee for the advanced care of the other. Sometimes an arrangement may be made to let the healthy person move into assisted living with the other person at a reduced rate. Sometimes, if one person needs assisted living, a CCRC may allow the couple to stay in independent living and pay for a 24/7 companion to assist them. Here are some examples of the problem: http://pilotonline.com/news/local/health/norfolk-retirement-home-rules-irk-some-residents/article_62ef80c6-9f03-52da-b37f-72487c9bf422.html
Research on level of care decision problems
A major attraction of a CCRC is the continuum of care; the ability to transition to higher levels of care while staying at the same facility. However, the question arises, “Who makes the decision of when I need to move to a higher level of care and how much control do I have over the decision?”
A study published in Gerontologist considered the problems CCRC residents said they had in moving between levels of care. These problems could be placed under three major categories: autonomy, fatalism, and social disengagement.
Autonomy
This is being able to live with independence and the freedom to live as one wants to live.
Independent living residents spoke of unsuccessful efforts to get clear answers regarding transitions and their inconsistent application. They perceived unfairness in the application of facility rules, such as preferential treatment for residents with prestigious former careers. Residents in the study thought that resident social status was more important to staff than health status.
Lack of free will in care level transfers. Participants perceived a lack of free will when forced to move out of independent living. Although CCRC contracts specify that the facility will make the final determination when residents should move to a higher level of care, most residents in the study said they were unaware of this.
The decision to move a resident into a higher level of care is usually based on the resident’s performance on the Functional Assessment Measure, a standard test of cognitive, behavioral, and social functioning along with a collective evaluation by a committee, composed of the director, a wellness nurse, the director of resident services, and the assisted living or skilled nursing administrator. The facility director usually makes the final decision.
Residents in the study discussed a permanent move to a higher level of care as a sign that they could no longer care for themselves and needed help. Residents' former statuses partially influenced this difficulty in accepting a move. Most had wielded substantial control in their former careers and saw the move as them losing control of their lives.
Moving out of independent living was perceived as a threat to privacy and personal space. Residents in the study perceived each move as a loss of freedom. Cottage dwellers who moved into an apartment thought they lost some privacy and freedom and that more was lost each time they moved into a higher level of care, especially if they had to share a room.
Residents thought the rules in assisted living and skilled nursing were overly restraining. They thought the rules in assisted living and skilled nursing hindered their independence and that the rules regarding transitions were unclear, ambiguous, and applied inconsistently. These sentiments were most common in residents moving from independent living, especially those experiencing declining health and ones who had moved recently and still had the experience on their minds.
Residents considered rules as constraints on everyday life. Those in a higher level of care complained about having to eat meals at times determined by the facility, limits on what they could have in their residences, and the care of personal needs, such as having to wait for staff to take them to the bathroom despite having the ability to do so themselves.
Fatalism
Residents' perceptions of disempowerment were closely related to feelings of fatalism, the concern for death, and the irreversibility of moving to assisted living and skilled nursing.
- Death. Assisted living and skilled nursing residents spoke of death as something they accepted or looked forward to, frequently describing it as an escape. Most references to death as escape suggested a desire to avoid further health decline, boredom, or apathy.
- Meals. With independent living residents, dinners had special significance as the main outlets for interaction and community building. The deterioration in social interaction during meals in assisted living and skilled nursing contributed to a feeling of fatalism.
- Uselessness. Assisted living and skilled nursing residents described feeling useless, not being able to do much for themselves or others so they seemed to feel that death was beneficial. Independent living residents had similar views about moving to assisted living and skilled nursing; they thought it meant adopting a "dying" role.
- Irreversibility of the move. Residents in the study described social boundaries between independent living and a higher level of care, regardless of facility rules. They believed that once the move occurred, one could never go back. Once you left independent living, it was as if you had moved to another city and your independent living friends forgot you. Residents also spoke of the "irony" of moving into a CCRC; they had been drawn to it as an independent living retirement community and had not anticipated spending the rest of their lives in assisted living and skilled nursing.
- Seeing your future. Independent living residents in better health expressed displeasure regarding other residents with walkers and wheelchairs eating in the independent dining room; they wanted to separate themselves from those with visible signs of disability, which leads to those with visible signs of disability isolating themselves or risking being shunned by others who did not want to be confronted with something that could happen to them.
Social disengagement
Residents moving into assisted living and skilled nursing noted changes in the amount and the nature of social interaction.
- Social interaction with independent living residents. Social interaction decreased once one made a transition out of independent living. Independent living residents attributed this to their own busy lives, lack of proximity, not wanting to be exposed to the depressing assisted living and skilled nursing environment, and not wanting to face their own mortality. Assisted living and skilled nursing residents seemed to accept social disengagement as expected and based on independent living residents not visiting them, not vice versa.|
Independent living residents described assisted living and skilled nursing residents as lacking control and choosing not to be active. They noted that many assisted living residents did not speak to each other and that the facility used the assisted living room for other purposes because residents were not using it.
Although assisted living and skilled nursing residents agreed that there was a decrease in social interaction, they did not blame their independent living friends. Rather, they considered it just a part of the dying process. - Nature of social interaction. Assisted living and skilled nursing residents also expressed changes in the quality of interaction. Although having longtime independent living friendships, they developed new friends in assisted living or skilled nursing. They considered their lives as "different" than their independent living friends’ lives and thus had little in common with them any longer.
Nothing is perfect
Anywhere you live, there is always something about it you don't like. However, when everything is considered, a CCRC is a great place to live and most people wish they had moved in sooner.
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