Neurodegenerative diseases are a challenge for the whole family. Living through them with an outlook of learning and solidarity is important for facilitating the process between the patient and caregiver.
Rafael Piñeres – Clinical Neurologist
The arrival of an illness in the family is a process that not only affects the patient physically and emotionally, but it can also be a challenge of compassion, learning, and acceptance for those around them. When it comes to diseases that are obstacles that affect elderly adults’ ability to move their body or express themselves correctly, their independence disappears and becomes a priority within the family circle.
This is the case with neurodegenerative diseases. Clinical neurologist Rafael Piñeres explains that “neurons are the cells in charge of coordinating all motor, sensory, cognitive, and language functions for the correct functioning of the central nervous system. Therefore, when these neurons fail, problems related to the functioning of the body and mind start to appear.” Neurons do not have the ability to regenerate, which is why there is no cure, though there are treatments which allow the patient and their family to live through the illness in the best way possible.
This group of diseases includes Alzheimer’s, Parkinson’s, and amyotrophic lateral sclerosis (ALS), which, according to Piñeres, are the most common, and due to the complexity of their symptoms, patients need support, company, and permanent care. “All cases and processes are different, however, sometimes the designated caregivers can suffer even more than the patients themselves,” adds the specialist.
Alzheimer’s is a type of dementia that affects memory, thoughts, and behavior, and interferes with the patient’s ability to perform daily activities. “In an advanced state, the person who, in reality, is going to be aware of everything is the caregiver,” states Doctor Piñeres. With ALS, the opposite happens. With this condition, the patients lose control over body movements, while mentally and emotionally they are conscious of their state, “so the caregiver, in addition to looking after the patient’s body, must also take on the emotional changes that come with the disease, such as depression and irritability,” stresses the specialist.
A family affair
So, what can be done to ensure stability on both sides? For example, with Alzheimer’s, in 2017 the World Health Organization adopted the first global action plan for dementia focused on caregivers. The strategy includes the digital platform iSupport, which aims to improve the quality of life of the family members in charge of patient care and routines. The report recommends a series of steps and activities to prevent the emergence of other diseases within the group of caregivers, as well as for reducing conflict between the different members of the family due to an increase in stress on those affected, which could lead to damaged relationships. While the strategy is focused on dementia, the advice can be applied to other neurodegenerative diseases.
The first recommendations are focused on education, on knowing about the illness in-depth in order to avoid clinging to misconceptions or myths related to the disease, which may lead the caregiver and family to handle some situations wrongly. Knowledge gives them clues to determine when to go to the doctor or identify physical and behavioral changes in the patient’s process. It also prepares them to accept the patient’s emotional changes.
This is a phenomenon described for the first time in 1995 by North American psychologist Charles Figley. It is characterized by the physical and emotional stress that comes with caring for a patient.
The platform iSupport emphasizes that “caring for a person with a type of dementia can affect the physical and mental health of the caregiver, as well as their social relationships.” This is why it encourages the caregiver to establish some self-care routines where relaxation is the focus. It is important that the caregiver and closest loved ones take the time to rest, relax, and do other activities such as meditation or practicing a sport.
This is also a way to open your mind, spend time with family and learn together how to look at the disease from a perspective of empathy and compassion for the patient. “Every process has its own grief, and it is not simple. Sometimes it becomes very complex and painful for everyone. This is why it is necessary to implement these types of measures to protect these people and make the caregiving process more manageable,” adds neurologist Rafael Piñeres.
Establishing new relationships between caregivers and patients helps to strengthen the already existing bond, and why not, to create a different one, one of complicity, trust, and where they can share things in common.
It is important for the caregiver or family group to identify an activity or interest that both can enjoy when possible, like music, for example. While compassion fatigue is related to being constantly surrounded by stress and pain, helping someone live their days in a positive way can have the same effect on the one who is encouraging these emotions.•
When the body and memory take different paths
Physical exercise, healthy eating, and staying socially active are the main activities which help prevent the appearance of some neurodegenerative diseases. Daring the brain to take on new challenges, such as learning a new language or playing an instrument is also important. Neurologist Rafael Piñeres explains that if there is a genetic predisposition to suffering from these diseases, these routines can delay their onset.
Which are most frequent?
- Alzheimer’s: is the most common form of dementia in elderly adults, and it usually starts after the age of 60. It starts slowly, and patients start to forget recent experiences, and with time they lose the ability to speak and recognize their family members.
- Parkinson’s: “in this case, there is a death of the cells responsible for the production of dopamine,” explains the specialist. This deficit shows itself in several ways, the most common being a tremor, in other cases stiffness, slow body movement, and postural instability. “There are other symptoms that affect the patient much more, such as depression, sleep disorders, and loss of smell,” he adds.
- Amyotrophic lateral sclerosis (ALS): of the three, this is the one with the lowest prevalence and fastest evolution. It can appear at any age, but it is more frequent in elderly adults. It affects the motor neurons, which are responsible for the movement of the body. Its symptoms range from weakened muscles and a rapid increase of spasms that over time prevent the patient from performing routine activities on their own.