Guide for caregivers and Alzheimer’s patients

2024-03-27 08:30:13

With the aim of offering help and guidance to family members and caregivers, as well as people with Alzheimer’s, the Pasqual Maragall Foundation has prepared a guide with recommendations.

Caring for and meeting the needs of a family member who suffers from Alzheimer’s means facing a whirlwind of feelings. Image taken from the guide.

The impact of the diagnosis of Alzheimer’s disease not only affects the affected person, but also encompasses the entire environment, the caregivers who, in 80% of cases, are the family.

Furthermore, the main caregiver dedicates an average of 15 hours a day, seven days a week, a time that during confinement rose to 18 hours a day.

This care can very often mean that insecurities and fears are generated, often due to lack of knowledge.

This responsibility, often assumed voluntarily or involuntarily, involves facing doubts, uncertainties and fears about the futureas well as constant insecurity about whether the best possible assistance is being provided.

For this reasonthe Pasqual Maragall Foundation with the support of the Barcelona Provincial Council, has prepared a guide with all the necessary information on the care of caregivers of patients with Alzheimer’s and on the care of these patients themselves, such as: identifying indicators of overload and learning to cope with them or better understand the disease and patient reactions to improve the quality of care.

Elena de Andrés, psychologist and therapist at the Pasqual Maragall Foundationstates: “This guide becomes a tool for all families who care for a person with Alzheimer’s because in a single document they find information of interest, as well as recommendations to empower themselves and decide steps to follow while taking care of themselves. “.

The personal impact of caring for a loved one with Alzheimer’s

Caring for and meeting the needs of a family member who suffers from this disease means cope with different feelings. This process includes bear the impact of the diagnosis, manage one’s own feelings and assume the needs of continuous learning.

This situation can take its toll on the caregiver and is known as caregiver overload syndrome because it refers to the state of exhaustion, both emotional and physical, that caregivers experience.

Some of the most important symptoms of the syndrome caregiver overload are the following:

• Sleeping problems
• Decrease or abandonment of hobbies
• Disinterest in living new experiences
• Social isolation
• High irritability
• Pain or discomfort without an apparent health problem
• High stress and anxiety levels
• Consumption of anxiolytics or antidepressants

Therefore, caregiver overload syndrome involves a risk to the health of those who care and can affect the care you provide to your loved one.

In the moderate phase, the person with Alzheimer’s will need more help, which will increase their dependence on their caregiver. Image taken from the guide.

Advice for Alzheimer’s caregivers

Caregivers of people with Alzheimer’s should understand that your new role must be integrated into the framework of their life context, also taking into account their own physical, social and emotional needs to prevent your health and well-being from depending exclusively on the sick family member.

Some tips offered in the Pasqual Maragall Foundation guide for self-care for caregivers are:

Protect the body: Get enough sleep, do regular physical exercise, practice relaxation, lead an active life…

Take care of emotions: Accepting negative feelings is key to learning to manage them and live positive ones more intensely. The caregiver of a person with Alzheimer’s may experience mood swings, irritability, or nervousness. Knowing the evolution of the disease and understanding that it can trigger a variety of emotions and sensations in other people will help you face conflictive situations with more fortitude.

Take care of relationships and maintain social life: Immersed in the task of caring for their family member, the caregiver may tend to isolate themselves, abandon other activities or distance themselves from their friends. Seeking family and social support will help avoid caregiver isolation. Asking for help is not a sign of weakness and accepting it is very useful as a therapeutic tool.

Manage guilt and sadness: Caregivers often feel guilty, for example, when they do not understand what the patient asks or tells them. This feeling is exhausting and it is necessary to identify it in order to share it and then manage it. On the other hand, sadness cannot be avoided. You have to try to find reasons for joy in the situation and think about them regularly.

It is advisable to be attentive to the evolution of the disease and adapt care. Image taken from the guide.

Guidelines to facilitate the care of people with Alzheimer’s

Likewise, from the Pasqual Maragall Foundation They have included in their guide a series of guidelines to facilitate the care of those affected and at the same time promote their independence:

Simplify: generate simple, orderly and lightly loaded environments.

Just supervise, as long as it is enough: There is no need to anticipate incapacity. A person affected by Alzheimer’s, without pressure and with patience, usually does many more things than their caregiver expects.

Fractionate: break down into small achievements daily activities, ensuring that one step of the activity has been completed before continuing with the next.

give time: avoid rushing and plan routines having a wide margin of time for its completion.

Help, but not solve: maximizing the autonomy of the person with Alzheimer’s, as well as their self-esteem and their feeling of usefulness and self-confidence.

Maintain routines: They make it easier to predict what is going to happen throughout the day. However, you should not be excessively rigid and opt for some flexibility if the person is excessively restless and refuses to cooperate.

Promote physical activity and cognitive and functional stimulation: Try to ensure that the person with Alzheimer’s participates, with the necessary adaptations, in daily activities with time for rest and leisure.