A common dilemma:

«Should I make every effort to keep my elderly demented parent at home for as long as possible, or should I search for the best possible nursing home?»

It is understandable that due to the strong family bonds in our country and a sense of obligation towards our parents, the decision to assign their care in specialized care units is not an easy one. Yet for some of the patients and some of the families care at home within the nuclear family is not the optimal option and a solution is urgently needed.

In the dilemma of “paid caregiver at home or specialized elderly care unit” there is not a clear answer. Each incident is judged differently and important parameters that have to be considered are the existence of a supporting network of relatives and friends, the socio-economical status, the pace of daily living as well as the state of health of the elderly. The care of a demented patient is complicated, on a 24 hour basis and needs to be provided by specialized staff. The behavioral disturbances and the changes in the patient’s personality become dominant and without the proper treatment (pharmacological as well as psychosocial) the deterioration of the patient’s and the family caregiver’s psychological and physical condition is more than certain. 

By examining the two “care scenarios” of a demented patient we have to note the following:

Regarding the care inside the family environment it is important to keep in mind that elderly live longer increasing the number of years they need total care. Women in the family who were the tradition informal care-givers are more likely to gain formal employment outside home in better and better jobs. Paid formal caregivers are more expensive and not always trained or reliable to do the job. 

Regardless of who provides the care at home and despite the best intentions, care at home might not always be adequate. For most of the time the caregiver is physically exhausted since many demented patients do not sleep more than 2-3 hours consecutively. This makes the caregiver at time irritable, impatient and finally burned-out. Attempts to treat insomnia with sleep medication, is rarely effective and, can enhance patient’s already existing confusion (chronic delirium superimposed on dementia). In addition to the principal full-time caregiver a substitute part-time care giver is necessary to allow vacation, sick leave or emergencies for the principal caregiver.

Often the patient and the caregivers spend long hours in social isolations or, staring mindlessly, at the TV thus increasing the sense of caregiver’s irritation and patient’s apathy. Since patients do not always understand what is being done to them simple but essential activities like dressing, grooming, bathing, may end up in a struggle between a confuse patient and a willing but helpless caregiver. 

As the disease progresses patients have difficulties to move and to swallow food. Good nutrition becomes a challenge and the risk for fatal food aspiration more and more real. Attempts to maintain mobility by encouraging the patient to move became more difficult and with unskilled supervision run the risk of falls and complicated fractures. Since demented patients can hardly complain concomitant illnesses such as pneumonia, acute abdominal events, can easily be missed by untrained caregivers. Furthermore, considering the large number of pills many elderly take, it is not difficult for the non-medically trained caregivers to make mistakes. Moreover, as the disease progresses patients can not recognized even the closest family members or a long-standing formal caregiver hence the family’s intention to provide one to one personalized becomes less feasible

Finally, the “free” care at home has many hidden financial costs. Payments to the formal caregiver or the lost income of the informal caregiver, cost the residency occupied by the patient and the caregiver in paid rent or lost rent, house maintenance, food, doctors and medications are only some of these hidden costs.  Although, reasonable care can be provided at home in requires a costly logistic operation and the active involvement of a knowledgeable family member.    

On the other hand the awareness about dementia and Alzheimer’s Disease that has characterized the last 25 years has led to the establishment of   nursing home specialized in the treatment of demented patients. These high-end nursing homes for the demented elderly are more and more apt to provide good, efficient care for the demented elderly and have good incentive to do so. First they act in a competitive market and their reputation for good care is their principal asset. Second they are under the watching eye of government regulators and the patient’s families. 

Many of the difficulties encountered in providing care at home have been tackled in specialized nursing homes. Since professional caregivers work in shifts physical exhaustions is lees likely. Caregivers are trained to perform grooming, bathing and feeding services in a way that it is perceived by patients and friendly and helpful. Doctors and qualified nurses who are present daily are able to recognize medical emergencies and other medical needs. Personalized physiotherapy programs, which maintain mobility and muscular strength is provided by qualified physiotherapists. Personalized occupational activities provided as in one to one sessions or in groups keep patients active. 

In summary, good, personalized care can be provided both at home and in specialized, high quality nursing homes. 

For most patients and families the nursing home option is the more sensible but is exceptional cases or when a specialized nursing home is not available care at home is a viable option.