Caregiver Guidance
Some journeys go beyond words
On a cool summer evening in Ankara, an elderly woman and her daughter sit together on a bench. The mother occasionally asks her daughter questions: "How long have we been sitting here? Have these trees always been here?" The daughter smiles patiently. Their dialogues are sometimes repetitive, sometimes tinged with sadness. But that evening, the only thing on the daughter's mind is: "How can I keep my mother more comfortable, more at ease?" This is where a concept emerges that goes beyond medical terminology—a pillar of our shared humanity: palliative care. For some, it’s an unfamiliar term; for others, a life-saving companion—especially in chronic progressive illnesses like dementia and Parkinson's.
What is Palliative Care? Key Concepts
The term "palliative care" is sometimes mistakenly associated only with "end-of-life care." However, palliative care is a comprehensive support process aimed at preventing and alleviating the physical, psychological, social, and spiritual problems faced by individuals with life-threatening illnesses and their families. Its goal is not only to treat the disease but to reduce pain, anxiety, breathing difficulties, nutritional issues, and emotional burdens and to provide the best possible quality of life.
Palliative care can begin in the early stages of an illness.
It is not a standalone medical treatment but a multidisciplinary approach.
It addresses the needs of patients, their families, and caregivers.
It encompasses pain and symptom management, psychosocial support, spirituality, and rehabilitation.
According to the World Health Organization (WHO), around 56.8 million people need palliative care each year. More than 67% of them are elderly.
Dementia and Parkinson’s: Slowly Progressing, Growing Needs
The common ground between dementia and Parkinson’s disease is their progression over years, causing slow but profound impacts on vital functions. In Turkey, the number of people living with dementia exceeds 600,000. It’s estimated that there are approximately 150,000 people with Parkinson’s [1].
Dementia, especially types like Alzheimer’s, initially presents with forgetfulness, personality changes, and disorientation, eventually affecting many basic skills such as decision making, communication, and movement. In Parkinson’s, tremor, muscle stiffness, and slowness of movement are prominent; as the disease progresses, additional symptoms such as depression, difficulty swallowing, and sleep disorders can develop.
Timing for Palliative Care: When and How Should It Be Considered?
Sometimes caregivers worry, asking, "Is it too early for palliative care?" or "They’re not bedridden yet; is it necessary?" However, international guidelines suggest that in progressive diseases like dementia and Parkinson’s, palliative care should be planned as early as possible [2].
Palliative care may be indicated if any of the following situations apply:
The disease is progressing and daily life is becoming difficult. (Noticeable difficulty with activities like bathing, dressing, preparing meals).
Significant distress, pain, or symptoms have emerged. (For example, inability to sleep at night, shortness of breath, anxiety, chronic pain).
Complications such as difficulty swallowing, frequent infections, and weight loss have developed.
Behavioral issues (agitation, aggression, depression) are impacting daily life and family relationships.
The patient and family are struggling to cope with the caregiving burden.
Early initiation of palliative care in chronic diseases empowers both patients and their families not just at the final stage, but throughout the long caregiving journey [3].
The Journey with Dementia and Parkinson’s: Why Is Palliative Care Necessary?
Progressive brain diseases challenge individuals and families in terms of emotions, time, patience, and strength. Palliative care acts as a companion along the way. While the average life expectancy after diagnosis is 8–10 years, each year may bring increased loss of function and rising care needs [4].
Pain and discomfort management: Pharmacological and psychosocial solutions for possible pain and muscle contractions.
Nutritional and swallowing support: Reducing the risks of choking and malnutrition that may arise from swallowing difficulties.
Psychological support: Helping manage depression, anxiety, and loneliness.
Social and spiritual guidance: Supporting both patients and loved ones through grief and loss processes.
A 2023 study found that in clinics where 70% of advanced dementia patients received palliative support, patient satisfaction and peace increased significantly [5].
Which Areas Does Palliative Care Cover?
Area | Contents |
|---|---|
Physical Support | Monitoring symptoms like pain, nausea, fatigue, shortness of breath, muscle spasms |
Psychosocial Support | Coping with depression, anxiety, loneliness, and relational disruptions |
Spiritual Support | Guidance regarding meaning of life, peace, faith, and hope |
Caregiver Support | Empowering family members through burnout, guilt, and grief |
Home and Community Support | Collaboration with home care teams, social services, and care centers |
Access to Palliative Care: The Situation in Turkey and Worldwide
Palliative care services in Turkey are developing and are provided by university hospitals, state hospitals, and some municipalities. As of 2017, there are more than 310 palliative care centers across Turkey [6]. However, home care and mobile teams are still insufficient.
Globally, access to palliative care remains a challenge. Only about 1 in 10 patients can access comprehensive palliative care [7]. Therefore, demanding your rights and raising the visibility of these services is crucial.
Deciding on Palliative Care: Facing the Emotions
For some families, the word "palliative care" may feel like giving up. But it’s far more nuanced than that. It’s important to remember that:
Palliative care does not contradict hope. In fact, it lessens the feeling of fear and loneliness.
It supports not only the patient but also the family. Caregiver burnout and feelings of guilt are reduced.
Decisions made with loyalty and love lighten the burden of conscience.
The person’s autonomy, dignity, and integrity are preserved.
Psychologists emphasize that grieving within palliative care is twofold: fearing the loss, while also honoring memories and the time spent together...
Signs of Palliative Needs in Dementia and Parkinson’s: How Does the Picture Change?
Advanced dementia: The patient can no longer recognize sounds, faces, or events. Many basic needs cannot be expressed. At this stage, the palliative care team provides physical and communication support to enhance comfort.
Advanced Parkinson’s: Speech becomes impaired, and mobility decreases significantly. Difficulty swallowing, infection, and risk of falls increase. Pain management and physical therapy come to the forefront.
Frequent hospitalizations: More than one infection in the past year, falls resulting in fractures, or malnutrition.
The Importance of a Multidisciplinary Approach in Palliative Care
The palliative care team typically includes:
Physician (neurology, geriatrics, palliative medicine specialist)
Nurse
Social worker
Psychologist
Physiotherapist and nutritionist
Spiritual counselor, as needed
The main goal is not the expertise of any single individual, but the creation of holistic and personalized care through teamwork.
How Can Palliative Care Be Made More Meaningful for Families?
Open communication: Transparent dialogue about the patient’s condition, decisions made, and possible developments.
Establishing a social support network: Not just family members, but also professional support and neighbors.
Noticing small joys: Looking at photos together, playing favorite music, recalling old stories.
Protecting mental health: The caregiver recognizing their own limits and seeking therapy if needed.
Utilizing online and local resources: Associations or support groups for dementia and Parkinson’s can be beneficial.
Small moments shared together can be as valuable as a healing medicine for families dealing with progressive disease. Each care journey, every shared laugh, is the true power of palliative care.
Frequently Asked Questions
Is palliative care the same as hospice?
Palliative care can be applied at any stage of illness, while hospice care is typically focused on the last stages of life (expected lifespan of six months or less).Is palliative care useful for things other than pain?
Yes, it provides broad support in psychological, social, and spiritual domains as well.Does providing palliative care make the patient stronger?
Most studies show that patients who receive early palliative care experience improved quality and satisfaction of life, and sometimes even increased survival.Is home-based palliative care possible?
Yes, many provinces in Turkey offer home healthcare teams. For more details, you can find official information here.
Focusing Not on the End of Life, but Its Meaning
Palliative care is where science, humanity, and solidarity merge. Especially in slowly progressing neurological illnesses such as dementia and Parkinson’s, the goal is not only to reduce suffering, but also to add meaning to the rest of life. The question, “Am I losing my mother or father?” can make one feel vulnerable. But never forget: Providing an honorable and peaceful life for your loved one is also an expression of love.
Conclusion: A Journey, Side by Side
The journey with illness is not always one to be walked alone. For both the patient and the caregiver, palliative care is an invitation to understand fears, share hardships, and discover the value of life together. And believe this: a peace that words cannot express can be found in good care.
References
المنشور التالي في المدونة
