(Doctorate, American International Theism University, USA) 
Title of the thesis
Progressive Grief and Loss on a Long-Lasting Degenerative Condition. How to Face Physical and Cognitive Decline of a Beloved Elder by an Adult Relative
Family members including adult children and spouses mostly care for people suffering from degenerative diseases such as Alzheimer’s, dementia, and Parkinson’s disease. Nevertheless, the complexity of these diseases means that caring for patients poses emotional and psychological issues in caregivers. They witness how their life is diluted, how they lose physical and mental faculties, and how in moments of lucidity they realize all this, which makes them suffer twice. Additionally, this suffering extends to family, friends and other close people. Anger, lack of understanding, despair as a result of empathy with the patient come hand to hand with unimaginable tolls on the person with a certain emotional or relational bond. It is no longer facing the moment of death, where it is logical to think of a process of mourning. It is to face it while the patient is still alive, although turning off cognitively. And it is to face it in stages where, at each step, the state of the patient, the disease, and the environment change, often radically, which means that the way of facing everything must adapt quickly, effectively, and progressively. In these types of diseases, grief begins much earlier.
This doctoral thesis investigates the emotional and psychological effects on family members caring for a relative with a degenerative disease, and on the evolution of the feeling of loss during degenerative processes before the death of the patient itself. The five usual phases of denial, anger, negotiation, depression, and acceptance (Kübler-Ross & Kessler, 2005) take on a new meaning when living with a clinical condition that makes the very definition of each person evolve, along with the stages of the disease, against the clock. What a person emotionally linked to the patient experiences at a given moment and allows him to face, assimilate and act on a certain situation, breaks down a little later. However, later, perhaps a week or perhaps a month later, the same patient can be defined in a different way, due to that evolutionary and unstoppable condition. This progressive definition of the person through moods, character, relationships, desires, memories, and other components, means that the patient’s environment must evolve at the same pace, if not faster, in order to offer some kind of comfort or support to the patient, and even to the rest of the emotional context (e.g. family environment).
It is at that very moment when the sixth phase suggested by Kessler (2019) correlates all the previous ones: Meaning. Somehow, the patient may find some kind of meaning within the pain. For the loved one, if he aspires to be useful to the patient and his emotional context, as well as to assimilate that unstoppable process in such a way that it does not cancel other functions of his own, it is mandatory to find that meaning or, at least, a practical and personalized approach of support. Something that transcends the same fact of progressive loss, of anticipated mourning, in life.
A review of relevant studies concerning the emotional and psychological experiences of family members is conducted before highlighting the phases of cognitive degeneration in patients. The information from the literature review is then used to develop psychological and emotional profiles of family members. Behavioral guidelines regarding ways family members can cope with their emotional and psychological experiences are developed, as an application of the literature findings into practice. The last step it to implement those guidelines to a case study involving an adult son caring for a father with a degenerative condition.
The findings demonstrate that caring for a relative with a degenerative condition is a demanding undertaking both psychologically and emotionally. In particular, family members caring for the patient are compelled to sacrifice their time and efforts to focus on the caregiving process. Sometimes they have to offer care 24 hours a day, which results in adverse emotional and psychological outcomes such as high depression, stress, and anxiety levels. Other factors such as problem behaviors of patients, lack of support from family members and other professionals, and inadequate knowledge about the degenerative disease process contribute to negative emotional and psychological outcomes for family members.
Factors that influence the experienced emotional and psychological issues include the evolving nature of the disease process with its various phases, the nature of the relationship between the caregiver and the patient, and the personality traits of the caregiver. Others are the duration of care, the psychological and emotional health of the caregiver before initiating the care process, and the social skills of the caregiver.
Caregivers can cope with the aforementioned challenges by seeking support from family members and other support groups, considering their health, resting regularly, getting time off, learning about the disease process, and seeking professional assistance from counselors or therapists. This mind setting is approached as a progressive loss and a progressive grieving before the actual decease. This phase comes with additional challenges, associated to long-lasting conditions that, utterly, will be extended to the feelings and psychological tolls for the departed, loved ones.
This doctoral thesis is structured as follows:
- First, it conducts a literature review on a) psychological and emotional effects on family members with patients with degenerative diseases; and (b) phases of cognitive degeneration in elderly patients.
- Second, it finds and classifies common patterns within the previous literature review, which allow characterizing psychological and emotional profiles of the family members, related to the phases of cognitive degeneration of the patient. That is, it crosses the two parts of the previous literature review.
- Third, it provides behavioral guidelines so that the family member can face the emotional states associated with the phases of the disease in a constructive way, as a personal guide.
- Fourth, it applies these guidelines to a specific case study: How an adult son copes with the progressive physical and cognitive decline of his father due to a degenerative disease (e.g., Parkinson’s).
- Fifth and final, it presents outstanding conclusions from the research and the case study.
Additionally, in the Annex section, four research papers are presented, as complementary resources that depict some specific parts of this doctoral thesis.