Every person living with dementia requires a caregiver. As the disease progresses, the need for help increases as difficulties appear in daily management and self-care. Dementia often involves a restructuring of roles at different levels, both social and family-related.
All people, including patients and caregivers, have diverse needs: physical, emotional, social and related to personal recognition. Throughout the course of dementia, it is important to address the needs of both and ensure they are met, without placing the caregiver’s needs in the background.
The caregiver is responsible for ensuring the care of the person with the disease. They often take on the organization of daily life and may provide support with household tasks, administrative or representation duties, as well as personal care. As dementia is a dynamic and progressive process, the caregiver also experiences changes as the disease evolves.
Caregiver burden
Providing care can lead to caregiver burden. One part of this burden is visible and relates to the hours dedicated to care, lack of rest, the accumulation of responsibilities or the difficulty of balancing care with other personal or professional duties.
However, there is also a personal experience involved. Caregivers may feel that they cannot cope with everything, feel guilt for becoming frustrated, sadness due to the changes caused by the disease, frustration in the face of difficult behaviours, or a sense of loneliness when making decisions.
This strain may manifest physically through persistent fatigue, insomnia, muscle pain or headaches; emotionally through irritability, anxiety or discouragement; cognitively through difficulties concentrating, organizing tasks or feeling mentally overwhelmed; and socially through a gradual reduction of personal spaces, hobbies and relationships. Recognizing these signs can encourage changes that support the caregiver’s own needs.
Preserving the caregiver’s health
To sustain caregiving over time, it is essential to preserve one’s own health. Maintaining a healthy and balanced diet, drinking water regularly and avoiding stimulants, as well as engaging in physical activity such as sports, walking, dancing, climbing stairs or exercising at home, can help release tension.
Respecting rest is equally important. Establishing sleep schedules, avoiding daytime naps, using the bedroom only for sleeping, having a light dinner, engaging in relaxing activities before bedtime and avoiding stimulants such as coffee, tea or chocolate can improve rest. Having support in caregiving tasks and learning specific transfer techniques when the person with dementia needs assistance moving are also protective measures to prevent injuries.
It is also important not to postpone medical check-ups, diagnostic tests or ignore persistent symptoms in order to receive the appropriate treatment and recommendations.
The emotional impact of caregiving
Emotionally, contradictory feelings may arise and are often part of the caregiving process. Recognizing, expressing and sharing these feelings can help understand them and avoid self-judgment. Practicing relaxation techniques such as meditation or yoga can also be helpful.
Learning about the disease
Emotionally, contradictory feelings may arise and are often part of the caregiving process. Recognizing, expressing and sharing these feelings can help understand them and avoid self-judgment. Practicing relaxation techniques such as meditation or yoga can also be helpful.
Avoiding caregiver isolation
Isolation is a risk because caregiving can occupy almost all available time. However, maintaining social connections and personal spaces is essential for caregivers. Sharing experiences in support groups can help normalize what is being experienced through emotional support and understanding from others, as well as provide useful information about how to act or establish routines with the person with dementia.
Maintaining relationships with people in one’s environment, continuing hobbies and reserving personal time for enjoyable activities are also beneficial.
Sharing caregiving responsibilities
Sharing direct care responsibilities is important. Often people expect others to offer help spontaneously, but asking for help in a concrete way can facilitate collaboration. It is important to adjust expectations about what is needed and what others can offer.
Considering external resources such as home care services, hiring a professional caregiver or attending a day care centre does not mean neglecting the person with dementia, but rather expanding the support network. For this reason, it is useful to know the procedures required to access services and benefits available for people with dementia and their caregivers, and to begin these processes at the appropriate time.
Making decisions about care
Sharing direct care responsibilities is important. Often people expect others to offer help spontaneously, but asking for help in a concrete way can facilitate collaboration. It is important to adjust expectations about what is needed and what others can offer.
Considering external resources such as home care services, hiring a professional caregiver or attending a day care centre does not mean neglecting the person with dementia, but rather expanding the support network. For this reason, it is useful to know the procedures required to access services and benefits available for people with dementia and their caregivers, and to begin these processes at the appropriate time.
Caring for the caregiver
Caring for a person with dementia is demanding. It is often a long process that triggers many different emotions. Love and commitment to the person affected do not prevent exhaustion. Preserving the caregiver’s wellbeing is therefore essential to ensure quality care that can be sustained over time.
López García, E. P. (2016). Caring for those who care. Ciencia y Salud Virtual, 8(2), 62–70. https://doi.org/10.22519/21455333.672
Sílvia Preckler
Social Worker
