Progressive neurological diseases such as amyotrophic lateral sclerosis (ALS), Parkinson’s disease, and dementia bring complex challenges that affect both patients and families. Symptoms often progress slowly but relentlessly—impacting mobility, cognition, mood, and independence.

Neuropalliative care combines the principles of neurology and palliative medicine to manage these evolving challenges. The goal is not cure but improving comfort, dignity, and daily quality of life through early symptom control, emotional support, and advance care planning for patients and caregivers throughout the disease journey.

In simple terms, neuropalliative care helps patients live better, not just longer.

Core Principles of Neuropalliative Care

Unlike traditional palliative care, neuropalliative care is tailored to the long and often unpredictable course of neurological illness.
It focuses on:

  • Early integration of palliative principles alongside active neurological treatment.
  • Multidisciplinary collaboration between neurologists, rehabilitation experts, nurses, psychologists, and social workers.
  • Dynamic adjustment of care as symptoms evolve.

Core priorities include:

  • Relief of motor symptoms (rigidity, spasticity, pain).
  • Relief of non-motor symptoms (fatigue, depression, sleep disturbances).
  • Psychosocial and spiritual support to improve patient and caregiver well-being.
  • Reduction of caregiver burden through counselling and planned respite.
  • Advance care discussions held early to preserve decision-making autonomy.

Such proactive planning is particularly crucial in conditions like dementia or ALS, where communication and cognition can decline over time.

Neuropalliative Care in ALS

In amyotrophic lateral sclerosis (ALS), early neuropalliative involvement helps patients make informed decisions about interventions such as gastrostomy, non-invasive ventilation, or tracheostomy.

Because cognitive changes and loss of speech are common, advance planning is essential. The focus remains on aligning every medical decision with the patient’s personal values and comfort goals.

Palliative interventions target breathing difficulties, excessive salivation, and anxiety, while offering counselling and practical guidance to families preparing for end-of-life transitions. This approach prevents crisis-driven decisions and ensures that the patient’s dignity remains central.

Neuropalliative Care in Parkinson’s Disease

Parkinson’s disease often spans decades, with both motor complications (tremors, rigidity, balance issues) and non-motor symptoms (depression, fatigue, hallucinations, cognitive decline).

Neuropalliative care helps manage these complex layers by:

  • Providing symptom relief and medication optimization
  • Supporting emotional and psychological health
  • Facilitating ongoing goals-of-care discussions
  • Offering structured caregiver support, as caregiver stress strongly influences hospitalization rates and long-term placement

Integration can occur through specialist palliative consultations or primary palliative approaches, where neurologists incorporate essential palliative principles into their routine visits.
Both methods are proven to enhance patient comfort and caregiver satisfaction.

Neuropalliative Care in Dementia

For patients living with dementia, early palliative involvement is critical since decisional capacity gradually declines.

The focus includes:

  • Managing agitation, sleep issues, swallowing difficulties
  • Supporting communication and behavior management strategies
  • Providing emotional and spiritual support for families
  • Facilitating advance care planning early to avoid emergency decision-making

Because family members often shoulder the majority of caregiving, neuropalliative care also extends structured counselling and respite resources to reduce emotional strain.

Models of Neuropalliative Care

Two main care models are practiced:

  1. Specialty Neuropalliative Care
    • Neurologists collaborate with palliative care specialists to address complex symptoms and advance care discussions.
  2. Primary Neuropalliative Care
    • Neurologists integrate palliative approaches within their own practice, supported by structured tools and training.

Both models emphasize multidisciplinary collaboration across nursing, rehabilitation, social work, and chaplaincy services. Validated tools such as the IPOS Neuro S-24 and HOPE+ scales assess neurological symptom burden, while instruments like the Palliative Outcome Scale (POS) and Edmonton Symptom Assessment Scale (ESAS) monitor outcomes across broader palliative populations.
Using these tools enables timely interventions and helps measure impact on overall quality of life.

Challenges and Future Directions

Despite proven benefits, several barriers persist:

  • Limited availability of trained neuropalliative specialists
  • Misconceptions equating palliative care with end-of-life care
  • Uneven access to multidisciplinary teams

Addressing these gaps requires:

  • Education and awareness among neurologists and care teams
  • Integration of validated symptom tools into clinical pathways
  • Institutional support for multidisciplinary models

Early integration of neuropalliative care has been linked to better symptom control, reduced caregiver stress, and improved satisfaction during advanced stages of neurological illness.

Conclusion

Neuropalliative care represents a holistic and compassionate framework for managing progressive neurological diseases. By focusing on comfort, emotional well-being, and proactive planning, it bridges the gap between traditional neurology and palliative medicine. Through validated clinical tools, multidisciplinary teamwork, and timely intervention, neuropalliative care empowers patients and caregivers to maintain dignity, independence, and quality of life throughout the disease journey.

Practical Takeaway for Patients & Families

If your loved one is living with ALS, Parkinson’s disease, or dementia, early neuropalliative involvement can significantly improve quality of life.


At HCAH Rehabilitation and Recovery Centers, our PMR-led and multidisciplinary teams integrate neuropalliative principles into everyday care—helping patients manage symptoms, plan ahead, and live more meaningfully.

References

  1. Sleeman KE, de Brito M, Etkind S, Nkhoma K, Guo P, Higginson IJ, et al. The burden of palliative care for progressive neurological disease: a population-based mortality follow-back survey. Sci Rep. 2019;9:10518.
  2. Oliver D, Borasio GD, Caraceni A, de Visser M, Grisold W, Lorenzl S, et al. A consensus review on the development of palliative care for patients with chronic and progressive neurological disease. Eur J Neurol. 2016;23(1):30–8.
  3. Kluger BM, Miyasaki J, Katz M, Galifianakis N, Hall K, Pantilat S, et al. Implementation of palliative care principles in neurology. Arch Neurol. 2013;70(2):171–6.
  4. Corcoran J. Incorporating palliative care principles into movement disorder management. NeurologyLive. 2020.
  5. Miller RG, Jackson CE, Kasarskis EJ, England JD, Forshew D, Johnston W, et al. Practice parameter update: the care of the patient with amyotrophic lateral sclerosis: multidisciplinary care, symptom management, and cognitive/behavioral impairment. Neurology. 2009;73(15):1227–33.
  6. van der Steen JT, Radbruch L, Hertogh CM, de Boer ME, Hughes JC, Larkin P, et al. White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations. Palliat Med. 2014;28(3):197–209.
  7. Kluger BM, Fox S, Timmons S, Katz M, Galifianakis N, Subramanian I. Palliative care and Parkinson’s disease: integrating into routine care. J Neurol Sci. 2019;392:105–10.