Care Techniques
Chasing a Memory: The Challenging Journey of Dementia
One morning, with tears welling in your eyes, you wake up to a moment when your mother no longer recognizes you. Years of shared memories, warm embraces, and laughter together have faded behind a cloud of fog. In the advanced stages of dementia, witnessing the disappearance of your loved one’s identity and personal history is a unique emotional challenge for both the individual and their close ones. Yet, a journey begins—one filled with hope and compassion. At this point, it becomes crucial to consider what can be done to maintain ongoing value in life, create moments of peace, and preserve the person’s dignity.
Advanced Stages of Dementia: Diagnosis and Clinical Picture
Dementia is a progressive neurological syndrome. Its most common cause is Alzheimer’s disease, but other types include Lewy body dementia, vascular dementia, and more. The advanced stage typically presents with identity loss, difficulties in communication, loss of motor functions, and increased dependency. According to the literature, nearly 70% of dementia patients require full care in their last years (Alzheimer’s Association).
During this stage, one often sees inability to express oneself, difficulties in eating and swallowing, incontinence, being bedridden, and an increased risk of infections. In addition, behavioral and psychological symptoms (e.g. agitation, restlessness, aggression) are common.
What Do We Mean by Quality of Life?
Quality of life blends physical comfort, psychosocial well-being, autonomy, and respect. In advanced dementia, the goal is not complete healing, but rather to minimize pain and discomfort, preserving as much peace and human dignity as possible.
The World Health Organization (WHO) states that quality of life is a person’s perception of their own situation. While people with dementia may struggle to express themselves verbally, emotions can be conveyed and understood through eye contact, facial expressions, and movements.
The Role of Environmental Factors
A safe and peaceful environment: Living areas such as bedrooms and lounges should be simple, well-lit, and arranged so that frequently used items are easily accessible.
Reducing fall risk: It is essential to eliminate hazards like curled carpets or clutter and provide support with grab bars.
Stimulatory yet simple decor: Use colors and beloved objects, such as family photographs, that are not overly stimulating but still motivating.
Quiet and calm atmosphere: Noise, crowded spaces, or rapid environmental changes can cause stress and fear in the individual.
The Caregiver’s Role and Emotional Resilience
The burden on caregivers is often overlooked. However, research shows that 40% of relatives of dementia patients report moderate-to-severe depression and anxiety (Source).
So, how can quality of life be improved for both the patient and the caregiver?
Take care of your own health: Don’t neglect taking regular breaks and seeking social support (family, friends, professional counselors).
Caregiver education: Take short courses on the nature of dementia, behavioral responses, and crisis management. Educated caregivers experience less stress.
Support groups: Sharing similar experiences is very valuable for realizing you are not alone.
Ensuring Physical Comfort
Preventing pressure sores: Those bedridden for long durations are at high risk for pressure sores (decubitus). Changing positions, air mattresses, and regular skin checks are essential.
Body cleanliness and hygiene: Regular bathing, oral and skin care, and appropriate products for incontinence are necessary.
Pain management: Regular use of non-opioid pain relievers and monitoring with pain scales is recommended. Watch for nonverbal cues of pain (facial grimaces, restlessness).
Nutrition and hydration: If swallowing is difficult, pureed foods, suitable cutlery options, and liquid support are important. Medical nutritional support may be needed.
Psychosocial Support and Communication
In advanced stages of dementia, communication becomes largely nonverbal. Still, a caregiver’s genuine smile, a lovingly held hand, soft music, or sounds from nature foster trust and calm.
Body language and touch: Eye contact, holding hands, and gentle touches are highly effective tools.
Clear and slow speech: Use short sentences, a calm tone, and offer few choices.
Music therapy: Studies show that a familiar song can evoke positive emotions and sometimes even prompt verbal responses (Source).
Emotional validation: Accepting the person’s emotions—rather than trying to “correct” reality—can often be more helpful.
Touching Life Through Activities
Mental and physical activities in advanced stages must be highly individualized and simple. The aim is to cultivate a sense of accomplishment and add enjoyment.
Smelling and tasting games: Familiar scents or salty/sweet samples can trigger old memories.
Music and rhythm: In addition to the mentioned music therapies, simple clapping or musical games can make the day meaningful.
Gardening and nature: When possible, short walks outdoors or watering plants can boost motivation.
Art activities: Finger painting, paper cutting, or working with textured objects can create pleasant moments for both the individual and loved ones.
Conversations with old photos and memory objects: A brief smile or glance can be enough to recall a lifetime’s worth of love.
Professional Support and Palliative Care
In advanced stages of dementia, palliative care approaches designed to address a patient’s changing needs are critical. Worldwide, 38% of people with dementia receive this care approach, but in our country this rate is still very low (WHO).
Palliative care teams include:
Doctor (usually a geriatrician or neurologist)
Nurse
Social worker
Psychologist or counselor
These teams aim to resolve issues like pain, breathlessness, and infection, providing the best possible comfort for the patient. They also focus on reducing the caregiver’s emotional burden.
End-of-life Decisions: Dignity, Compassion, and Communication
In the advanced stage, sometimes the most painful questions about “quality of life” arise: How far should medical interventions be continued? Should nutritional support or intensive care be preferred? These are difficult decisions. It’s recommended that professionals and loved ones make choices according to the person’s prior values and wishes. Documents like “advanced directives” or “living wills” are becoming common in the USA and Europe, but are still emerging in Turkey (Alzheimer's Society).
In all circumstances, the basic principle is that the individual should be in a dignified, peaceful, safe, and loving environment.
Gratitude and Meaning: The Power of Emotional Care
In advanced stages of dementia, a patient’s signs of happiness are often felt through a “smile,” “calmness,” or “a brief glance.” Moments shared with them, warmth exchanged—these are full of meaning only the loving heart can see. While science requires professional caregiving, love and gratitude remain the true foundation of quality of life.
Summary: Steps to Improve Quality of Life
Create a safe and simple living space.
Never compromise on personal care, pain management, and hygiene.
Communicate with love and patience; never forget the healing power of touch.
Detect and quickly respond to underlying health problems and infections.
Create small moments of happiness with music, nature, and art activities.
Find support groups or psychological support for yourself.
Seek help from palliative care professionals if possible.
On the dementia journey, it’s not the permanence of memories but the permanence of feelings that matters. Every minute spent with love, compassion, and attention is priceless.
References
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