Caring for individuals affected by dementia is a complex responsibility that covers the initial phases up to the advanced stages of the disease. In this context, training for caregivers becomes a fundamental cornerstone for delivering comprehensive and high-quality care.

A deep understanding of the various stages of dementia is crucial for planning, ensuring home safety, and managing daily routines effectively. To address the unique challenges of each stage, caregivers need specialized skills. The caregiver’s self-care, occasionally overlooked, proves to be a vital element, not only for preventing caregiver burnout but also for enhancing the well-being of the person in their care. Prioritizing ongoing training and personal well-being reinforces the caregiver’s abilities, promoting a healthier environment, and is vital for providing enduring care over time.

Here are some guidance tips to aid caregivers in managing critical aspects of care, thereby improving the quality of life for both the affected individual and themselves.

Consejos para familiares y:o cuidadores de pacientes con demencia 2

Guidelines on how to care for someone with dementia

Future Planning:

Following a dementia diagnosis, proactive future planning becomes crucial. As driving abilities are expected to decline, consulting with professionals is advisable to determine the appropriate time to cease driving. Engaging in open conversations about preferences, particularly concerning end-of-life matters, facilitates informed decisions in the future. Anticipating housing transitions, especially for those living alone, involves evaluating suitable assisted living arrangements. Designating a power of attorney in the early stages allows for effective decision-making on behalf of the patient when needed. Moreover, given the increasing complexity of financial management as the disease progresses, careful financial planning is also essential.


Ensuring home safety is vital to prevent accidents. Improving indoor safety involves measures such as maintaining clear hallways and ensuring adequate lighting. To enhance outdoor safety, consider installing alarms on doors and windows, providing patients with GPS devices, and issuing identification cards. These measures collectively contribute to comprehensive safety both inside and outside the home.

Daily Activities:

Scheduling activities during the person’s most alert periods and maintaining a routine are crucial practices to enhance the quality of life. Within these daily activities, vital self-care actions such as personal hygiene and grooming are integrated, playing a fundamental role in ensuring the physical and emotional well-being of the individual. Moreover, activities beyond self-care, including leisure, socialization, and cognitive stimulation, are incorporated. These activities contribute to sustaining vitality, fostering social connections, and promoting mental health, thus adding an enriching component to daily routines. It is important to emphasize that, despite seeking stimulation through these activities, achieving a proper balance is essential, as excessive stimulation can be stressful and fatiguing for the patient.

Toilet Routine:

In the early stages, encouraging consistent bathroom visits and limiting liquid intake before bedtime can help reduce accidents. As the condition advances, the use of absorbent pads or diapers becomes a common and practical approach.

Quality Sleep:

Quality sleep is essential for overall well-being. To achieve this, it is advisable to refrain from daytime napping, establish consistent sleep schedules, and manage environmental factors such as noise, lighting, and temperature.

Consejos para familiares y:o cuidadores de pacientes con demencia 3

Personalized Nutritional Care:

Ensuring adequate nutrition is essential in all stages of the disease. In the early stages, establishing a meal routine with smaller portions to maintain a consistent intake of nutrients and adjusting food textures based on chewing capacity is recommended. As the disease progresses, modifying the consistency of food, opting for softer or pureed options, not only ensures proper nutrition but also reduces the risks of choking or aspiration. Research supports the benefits of the Mediterranean diet in dementia, emphasizing the consumption of vegetables, berries, whole grains, fish, poultry, legumes, and nuts, along with the use of olive oil. This diet restricts the intake of red meat, sweets, processed foods, and alcohol. Regular monitoring of weight is crucial to ensure proper nutrient intake. In case of significant weight loss, seeking guidance from healthcare professionals is essential.

Physical Health in Advanced Stages of Dementia

In the advanced stages of dementia, the condition instigates a series of physical changes that impact both mobility and the overall health of the individual. The following addresses various aspects of this process:

  • Reduced Mobility: In the advanced stages, there is a significant decline in the ability to move, and this limitation is often multifactorial. The progressive loss of functions related to walking, standing, and transitioning from a chair or bed is a common and multifaceted challenge. Contributing factors encompass specific medications for dementia, underlying medical conditions, visual impairment, balance issues, and environments that are not adapted for the individual's needs.
  • Pressure Ulcers: The decreased mobility significantly heightens the risk of developing pressure ulcers, commonly known as bedsores. To prevent their occurrence, it is imperative to consistently change positions, maintain clean and dry skin, and regularly inspect for skin rashes or sores. Seeking guidance from healthcare professionals, such as doctors or community nurses, may result in recommendations, such as the use of specialized mattresses and cushions to alleviate pressure. Additionally, professionals may suggest specific treatments for pressure ulcers, tailored to the individual's condition.
  • Blood Clots: Limited mobility poses an increased risk of infections and blood clots. Encouraging and supporting movement, be it through walks or chair exercises, is crucial. Occupational therapists and physiotherapists can provide advice on equipment and adaptations to facilitate improved mobility.
  • Health Issues Linked to Infections: Physical well-being in these stages is also shaped by concerns such as infections, particularly urinary tract infections (UTIs), known to cause confusion and alterations in consciousness. Given the communication hurdles at this point, closely monitoring changes in behavior becomes imperative for promptly detecting potential health issues.
  • Pain Management: Despite the progression of dementia into advanced stages, individuals may still experience pain associated with factors such as aging, immobility, and other age-related conditions like osteoarthritis. The challenge lies in the inability to verbally express this pain, leading to the manifestation of unusual behaviors. Insufficient pain medication is a prevalent issue, and conditions like urinary tract infections and arthritis can often contribute to discomfort. Addressing this pain through a holistic approach to pain management, including medications and non-pharmacological methods such as massages, becomes essential for comprehensive care.
Consejos para familiares y:o cuidadores de pacientes con demencia 4

Communication in Dementia

As dementia affects the ability to remember and express, the caregiver plays an active role in initiating conversations. Active participation of the affected person in conversations is essential. The active participation of the affected person in conversations is essential. Avoiding mockery and recognizing comments, even if they appear out of context, is essential for fostering a respectful and communicative environment.

Navigating the advanced stages of dementia, where verbal communication wanes, non-verbal signals assume greater significance. Behavioral changes become a key avenue for expressing needs and emotions. Aggression may result from pain or perceived threats, while distress or agitation may indicate confusion. Recognizing these behaviors as responses to unmet needs is crucial for effective intervention. Sudden changes hinting at confusion and agitation may signal underlying medical issues. Such situations warrant consultation with healthcare professionals.

Maintaining patience, a positive tone, and friendly gestures adapted to the individual’s level create a comfortable and non-intimidating environment. This approach promotes more effective communication and understanding of individual needs, thus fostering comprehensive care in the context of dementia.

Addressing Difficult Behaviors

Providing care for individuals exhibiting challenging behaviors in dementia places a strain on caregivers both physically and mentally. Recognizing these behaviors as unintentional, adapting to situations, and taking a step back during moments of frustration contribute to emotional recovery. Stressing the significance of avoiding resentment in aggressive situations underscores the need to seek support for emotional processing. Engaging in conversations with fellow caregivers, professionals, or friends not only provides valuable perspectives but also offers emotional relief.

Consejos para familiares y:o cuidadores de pacientes con demencia 5

Caring for someone with dementia is a complex task that spans from early to advanced stages. It involves meticulous planning, ensuring home safety, and skillfully managing daily routines, including handling challenging behaviors. Ongoing training and seeking support are crucial for caregivers, fostering continuous improvement. Effective communication and a nuanced understanding of behavioral changes significantly elevate the quality of care.

Maintaining a delicate balance to avert burnout is paramount. Often undervalued but indispensable, self-care involves allocating time for rest and incorporating regular breaks, serving as a preventive measure against caregiver burnout. Prioritizing well-being not only fortifies the caregiver’s resilience but also contributes to cultivating a healthier environment, essential for sustaining a high standard of care over time.

About the author:

María Isabel Zamora is a physician with a double specialty in Psychiatry and Neurology. She has experience in the care of patients in general psychiatry consultations, and in a more specialized way, in the care of patients who combine psychiatric and neurological symptoms. She has worked with psychogeriatric patients and patients with functional diversity. She has experience in cognitive impairment, psychological and behavioral symptoms of dementia, psychiatric symptoms related to neurological disorders or chronic pain, autism, ADHD, adaptive disorders, depression, anxiety, addictions, bipolar disorder, obsessive-compulsive disorder, sleep disorders, eating disorders, etc.

Dra. María Isabel Zamora
Division of Medicine
Dra. María Isabel Zamora
Adults and adolescents
Languages: English, French and Spanish
See Resumé