Let Us Not Forget Those Who Can No Longer Remember Us: The Faces of Alzheimer

Saturday, 28 October 2017

Luz Johanna Denisse Rivera Collazo, ADN
Nursing Department, Interamerican University of Puerto Rico, Arecibo, PR, USA


During the last few decades, Alzheimer’s cases in Puerto Rico have been rising dramatically. According to the Health Department of Puerto Rico, for the year 2015 the confirmed numbers Alzheimer’s patients rose to about 34,500, although conservative estimates adding undiagnosed cases total about 70,000. Alzheimer’s is considered to be the fourth cause of death in Puerto Rico.

Those who suffer from Alzheimer’s need family care 24 hours a day, 7 days a week, just to maintain basic life function. The extent of care depends on the progression and the phase of the decease. The care of the Alzheimer’s patient requires efforts and changes in life priorities for caregivers, but they must learn to balance the patient care with their own needs and the needs of other family members. All family members should be educated on the conditions and progression of the decease, and must exercise preventative healthy lifestyle choices to protect themselves and the Alzheimer’s patient. Many studies have shown that most families reach a point when the home care of the patient is unbearable, so it is recommended that families of Alzheimer’s patients consider early in the decease the financial options needed to place the patient in a live-in full time care institution specializing in those patients.

From the point of view of Nursing, the concept of caring for others is defined as the relationship between the care giver and the patient. According to Doctor Jean Watson (1979), author of The Theory of Human Care, there is a risk of de-humanization of the care of the patient. This brought about by the administrative restructuring of most of the health care systems in the world, where there is a need to rescue the human, spiritual and transpersonal aspects in the clinical practice, as well as in the administrative, educational and research endeavors. Pinto Afanador (2000) mentioned that the best chronic decease care giver is someone with a family connection to the patient. This person assumes the responsibility for care, and participates the care decisions, supervises and supports daily activities and needs in an effort to compensate for the deficiencies in the self-care of the patient.

According to the World Health Organization (OMS), chronic deceases are defined as having long duration and of slow progression. Following this definition, the Health Department of Puerto Rico defines Alzheimer’s as a chronic condition, neurologically progressive, which affects mental processes such as memory, attention deficiency, executive functions, as well as speech, among other behavioral changes. According to the Alzheimer’s Association, caring for a loved one can be a satisfying experience, while demanding great responsibility and time sacrifices. This Association suggests that the care givers should endeavor to watch out for themselves, seek assistance from other family members and community resources.

In light of the above issues, the following objectives have been identified for this study:

  • Learn the best techniques and strategies for caring for an Alzheimer’s patient.
  • Identify the best ways for a care giver to stay healthy, physically, mentally and emotionally.

The hypothesis to prove are as follows:

  • The best care is given by someone who has been well educated about the decease, its progression and its needs.
  • The care giver can maintain their own healthy lifestyle while caring for their alzheimer’s patient.


This is a mixed study. For the quantitative analysis, a questionnaire was used which asked ten questions from a sample population of 12 caregivers. It consisted of 10 questions available through the “Survey Monkey” program, and its contents were kept confidential to avoid tainting the results. For the qualitative portion of this study, an interview approach was used on a sample population of 5 caregivers, using questions intended to identify the most difficult tasks and techniques utilized to achieve the best results. Field data was also compiled by observations of the fallows activities: “Camina por tu Heroe”, which took place in September 2016 in San Juan P.R. and at the meeting of the Support Group of Caregivers in Manati, P.R., during November 2015.


The results of the questionnaire were as follows:

Six caregivers (50%) classified their patient as being in the second stage of the decease, five caregivers (41.67%) considered themselves to have a good working knowledge about the decease, eight caregivers (66.67%) sometimes feel they have more responsibility they can handle, six caregivers (50%) sometimes consider themselves to be more stressed than before starting caring for their patients, six caregivers (50%) sometime have sacrificed some of their customary tasks in favor of care giving activities, five caregivers (41.67%) sometime feel many of their most important life decisions are prioritized around the care giving responsibilities, four caregivers (33.33%) almost always feel alone in their care giving responsibilities and other four caregivers (33.33%) sometimes feel the same way, eight caregivers (66.67%) don’t want their caregiver responsibility to ever end, six caregivers (50%) sometimes feel satisfied with their care giving efforts, five caregivers (41.67%) almost always feel their patient will be well cared for as long as they remain in charge of their care.

Among the questions asked are:

What have been the most difficult tasks to deal with the patient? The following responses are listed in order of decreasing frequency:

  • To get the patient to bathe
  • Manage patient feeding
  • To get the patient to follow instructions
  • To get patient to cooperate in taking medications
  • Manage the patient’s moods

Which strategies are best for good care?

  • “When the patient refuses to bathe, I say that the doctor is coming to visit, then the patient goes ahead and showers”.
  • “In the meal, I offer the dessert last”.
  • “I am flexible, avoiding confrontation”.
  • “I play happy music to improve the patient’s mood or disposition”.
  • “Patience, music and a peaceful environment help me achieve the best care. Everything is easier when I am relaxed, if I take care of my needs first, then there is no rush while taking care of the patient, for the patient can take every ounce of patience I have”.

There was space in the questionnaire left for the caregiver to add whatever they considered important in their responsibilities, following are some of the responses:

  • “The responsibility is so great that I have difficulty sleeping, worrying about what I need to do the following day”.
  • “Caring for her, the day ends without accomplishing many of the tasks of the day, I forget some and run out of time for the others, because I work”.
  • “I consider it an honor and a privilege to care for my mother in her condition. She continues to be my teacher and inspiration of tenacity and perseverance”.
  • “The family does not always recognize the condition and needs of the patient”.

Field observations include the following:

  • Availability of educational resources regarding the decease.
  • Interest of the care givers and family members in seeking educational resources.
  • Opportunities for sharing feelings and experiences of caregivers with other caregivers in similar situations.
  • Participation of the different health agencies and organizations.


The objectives of the study have been met, the techniques and strategies for providing better care have been developed by the care givers thru a process of trial and error. Care givers have shared findings amongst each other, and have been applied according to the individual needs. The tasks needed to maintain the health of the care giver include keeping good organization, seek community support, meet with support groups and seek assistance as needed.

The hypothesis that the Alzheimer’s caregivers are most effective when they are well educated on the decease and its evolution is proved. A direct proportional relationship was established between the level of education and the quality of the Alzheimer’s patient’s care. The greater the knowledge, the better the care, the lower the knowledge the lower the confidence of the care giver and the quality of care as well. The hypothesis that the care giver can maintain a healthy lifestyle while simultaneously caring for the Alzheimer’s patient remains unproven. The research produced the following findings: Care for an Alzheimer’s patient is a multidisciplinary and familiar effort. The whole family must participate in the care efforts. If the family is unable to directly care for the patient, then financial arrangements must be made for professional patient care, because a single family member caregiver will suffer burn out due to the exhaustive responsibilities of the care effort. This hypothesis was not able to be proven, more research is needed.

Conflict of interest:

The author declares that there is no conflict of interest.