It is not unusual for attorneys, financial advisors, insurance professionals and even physicians to be caught in the midst of family disagreements about the issues of elder care.
Recently, in speaking to many professionals who serve the growing elder population, a major theme of their concerns has to do with the challenges of caregiving for those with chronic health and functional challenges, including cognitive declines. Although many of these professionals are not health or allied health professionals, they recognize the pitfalls of eldercare within their own practices and the potential for both unsatisfactory care of the individual and the attendant risk that might result to their practice.
For each profession, the challenges to their practice is a little different. Not surprisingly, the concerns are similar and relate to the ability of the consumer and his/her support system to make the best possible decisions for providing care in a safe environment. Questions of who should provide care, in which setting, at what cost, for how long and with what safeguards are paramount.
Risk often comes as a result of lack of information about appropriate options (the insurance advisor who hasn’t recommended long term care insurance or isn’t aware of when it should be triggered); negligence in attending to subtle changes in either function or relationships (attorneys who are not aware of protecting from exploitation when their client has memory loss or financial advisors who don’t sound an alarm when funds are being depleted in excessive patterns); safety issues in the home environment (a home care company who’s therapists don’t warn about a stove being left on) ; and potential for either neglect, abuse or exploitation by caregivers (anyone who witnesses inappropriate behaviors toward a care recipient and doesn’t report it). Sometimes these challenges are not apparent to the professional because they are not privy to the home environment and the daily interactions that occur between the care recipient and the care giver(s).
A professional Care Manager, and especially one who is certified through a recognized credentialing organization (NACCM, CCMC, NASW), is often the best means of mitigating risk for clients with complex health, functional, social and emotional needs. The Care Manager is often the extension of the professional advisor who can meet with the client in their own home, identify those areas that create risk and provide for safeguards, while ensuring that the wishes of the care recipient are heard and honored. Below we discuss some of the most common concerns that arise in caregiving.
Relationship of Care Recipient to Caregiver(s)
The caregiver/care recipient relationship is key to the quality of life, dignity and safety of the frail elder. Caregivers are often family members, paid helpers or unpaid social support persons with little or no training in the needs of the person for whom they are giving care. Caregiving is also emotionally and physically challenging because of the losses that occur over time. These losses often include increasing amounts of physical decline, cognitive challenges, emotional issues such as grief, anger and frustration.
When caregivers work in isolation there is the risk of their experiencing their own grief, frustration, anger and loss of self in the process of giving care. This is true for both family and paid caregivers. When caregivers don’t have support, periodic relief, the opportunity to express their own feelings and training for the particular challenges they face, there is the opportunity for burnout, which may lead to neglect or abuse.
The Care Manager is expert in negotiating the relationship between the caregiver and the care recipient, including knowing when to provide training, emotional support and respite. The Care Manager is also in the position of being able to create the best match of the paid caregiver to the home environment, the care recipient and family members. Proactive support of the caregiver is a mechanism for avoiding the negative consequences of conflict with the care recipient.
Compliance with a Physician’s Plan of Care
Most healthcare is provided in the home. This includes medication management, correct use of medical equipment, safety issues, nutrition/hydration, socialization and timely medical appointments. Caregivers are often managing complex health routines that include monitoring of medications that change over time; toileting activities, including incontinence; testing of specific vital signs, including blood pressure, sugar levels, blood thickness and oxygen saturation. Sometimes, daily injections, help with respiratory care, physical exercise and emotional support are part of the daily homecare regimen that are carried out by largely untrained caregivers. This may create a sense of burden, if not for the care itself, then for the necessity of managing so many details of the person’s care with precision.
Since most professionals who support elders are not in the home, the monitoring of all of these activities is left unsupervised on a daily basis. Studies have begun to document that the inclusion of a professional Care Manager has improved the maintenance of home routines, assured that care is focused on the primary care physician office in a proactive manner and has reduced the incidence of preventable re-hospitalizations. This effort to provide community based compliance with healthy routines and preventive care is becoming increasingly important with the expanding demographic and the improvement in medical technology that leads to increased longevity even among the frail.
Support for Family Decision Makers and Caregivers
Family disagreements over “what to do about mom” can create chaos for adult children and other family members involved in caregiving. Families may be well intentioned, but with different perspectives about the best means of giving care; they may be disorganized; they may be dysfunctional; or they may simply be distant geographically and therefore unavailable to give care.
In each situation, the Care Manager is in a position to enable quality caregiving through a process of education, mediation and the allocation of both private and public resources to reduce the challenges that each family may encounter. The Care Manager also assures that the “voice” of the care recipient is heard to assure that the care is consistent with his/her lifestyle, preferences and resources whenever possible.
Lastly, the Care Manager is expert at knowing about the community resources and entitlement programs that create an efficient plan of care. The Care Manger will know how to integrate different types and levels of care that are available in each community to assure that resources are used to maximum benefit. This involves knowing how to introduce care in a manner that matches changing needs over time. Titrating care to meet the trajectory of the illnesses over time is a crucial skill that assures efficient use of services and resources. This might include: knowing when to initiate long term care insurance benefits; accessing community resources to supplement private pay services; knowing how to access entitlement programs such as Medicaid and VA benefits.
Furthermore, when it may be time to move an elder out of their home, the Care Manager will assure that the facility chosen is one that is both affordable and able to provide the needed services. Families often shop real estate when they are looking for a placement, rather than shopping the best service match for the needs of the care recipient. What I mean by this, is that families often are looking at the appearance and the amenities of a facility instead of their ability to give appropriate levels of care now and in the future. It is the care, given over time that is critical, not the appearance that is most critical to a successful placement. Making a poor placement decision is expensive both financially, emotionally and physically for the care recipient and the caregivers.
A professional Care Manger increasingly is a helpful member of the interprofessional team that it takes to manage the complex health and social needs of frail elders. Family members need education about the resources and services that are available to support them through the challenges of caregiving. This is especially true since medical technology has enabled people to live with chronic health diagnoses for many more years than in the past. It is not uncommon for people with heart disease, pulmonary limitations, Parkinson’s, Alzheimer’s and a host of other illnesses to live for decades with functional and cognitive limitations and needing increasing levels of care.
The Care Manager will reduce risk for other professionals who are more traditional service providers by assuring that there is a holistic approach to caregiving services. The ability of the Care Manager to be in the home, to support all members of the caregiving team and to proactively address changes that arise will in turn reduce risk for all members of the team.