Q. My father was diagnosed with Lewy Body Dementia six months ago. We are trying to figure out the best type of care for him at this stage and into the future. I know a bit about palliative care and think that it could be a good option for him. Recently, someone in a support group mentioned neuropalliative care. What is it all about and how can it benefit someone like my dad? Thanks for your help!
A. Neuropalliative care is a field of medicine focused on improving the quality of life for patients and families living with progressive neurological diseases (PNDs), such as Lewy Body Dementia and Parkinson’s disease. Neuropalliative care involves a holistic approach to care, with attention to a person’s emotional, spiritual, as well as medical needs. Neuropalliative care is not only for patients near the end of life but at any stage of their illness.
Neuropalliative care aims to improve the quality of life for patients and families facing serious, life-limiting PNDs. Services provided often include:
- Help with managing symptoms of neurological conditions;
- Assistance with making medical plans for the future that can be included in Advance Care Directives;
- Emotional, spiritual, or social support for patients, family, and caregivers;
- Help managing transitions in care, including referrals to hospice services when appropriate;
- Symptom management for neurological diseases, including pain management;
- Help for patients and families to plan for the future, including continuing or changing course of treatment and anticipating future physical and emotional changes.
Who Can Benefit from Neuropalliative Care?
Patients who have been diagnosed with these PNDs may benefit from neuropalliative care:
- Amyotrophic lateral sclerosis (ALS);
- Parkinson’s disease;
- Dementia, such as Lewy Body Dementia and Alzheimer’s;
- Brain tumors;
- Huntington’s disease;
- Duchenne’s muscular dystrophy.
Study Examines the Effects of Neuropalliative Care on Quality of Life for those with PNDs
A recent study measured the effect of neuropalliative care on quality of life and satisfaction with quality of care in patients with PNDs and their family caregivers. The study was published in BMC Palliative Care – Volume 19.
According to the study, it is typically recommended that patients with progressive neurological disease receive general and specialized palliative care. The purpose of the study was to determine the effect of neuropalliative care on quality of life in both the patients and their family caregivers.
The study consisted of 151 patients in the advanced stages of their diseases and 140 family caregivers, who filled out a questionnaire for data collection. Patients and family caregivers completed the questionnaires both before and 3 months after the intervention. Before the intervention, there were no statistically significant differences in quality of life for either the intervention or the control group. After intervention, differences were identified in the areas of symptoms burden, emotional, social functioning, spiritual area (nonreligious), and in overall quality of life. Patients and family caregivers from the intervention group evaluated their satisfaction with the quality of care provided significantly more positively in all five analyzed domains.
Dr. Farrah Daly Discusses Neuropalliative Care
Dr. Farrah Daly is a Leesburg, Virginia based neurologist, palliative care specialist, and advocate for people with PNDs.
In a recent video for the Parkinson & Movement Disorder Alliance, she talks about neuropalliative care and support services for the entire family with the goals of assessing, prescribing and supporting treatments that address the mind, body and spirit. Dr. Daly offers the following advice about neurological diseases and patient behaviors for patients and caregivers:
- On Behavior Problems: “It is common for people to think the behavior problems are some kind of midlife crisis, or that the person with the illness is in control of their behavior. It’s important to understand that their brain is changing in a way that makes them seem difficult, unpredictable, or uncaring. It’s not a choice they are making.”
- On Recognizing Cognitive Problems: “Usually it is the family or friends who notice the problem, rather than the person who is ill. Families describe frustration and often attribute early symptoms to depression. Cognitive testing in the office setting might not reveal subtle cognitive problems, so the history provided by the family is extremely important.”
- On Questions to Ask Your Doctor: “Some important questions to ask your doctor: Am I taking any medications that could be making this situation worse? What can I expect next from this illness? How can I prepare for that?”
- On Caregiving: “Caregiving is not usually a one-person job. Try to get help early on—before you think you need it! If your loved one is impulsive, look around your house with a focus on safety. Is there anything they have access to that could be especially dangerous?”
- On Advance Care Planning: “Do the difficult work of advance care planning right from the beginning. Planning for later stages of disease is an empowering way to have a voice in your care even when you can no longer communicate.” The Farr Law Firm offers a Dementia Directive as part of our proprietary 4 Needs® Advance Medical Directive.
- On Frontotemporal Dementia: “The behavior problems from frontotemporal dementia can be extremely challenging. Support groups are a valuable way to find practical information and local resources. There is an active support community of caregivers online.”
- On Vascular Dementia: “Vascular dementia is very common. It is possible to have tiny strokes that no one notices until the resulting problems accumulate over time. This illness (vascular dementia) can take your ability to make decisions for yourself. Make sure you have a voice in your future care by taking the time to do detailed advance care planning.” What this means is doing Level 1 Planning through the Farr Law Firm, which is advance care planning using our proprietary 4 Needs® Advance Medical Directive and a comprehensive general power of attorney.
- On Making Lifestyle Changes: “You can reduce your risk of getting worse by changing your lifestyle, and this can help your heart health too! Exercise, eat well, control your blood sugar and your blood pressure.”
If you think that neuropalliative care sounds like a good option for you or a loved one, be sure to ask your neurologist or primary care physician for a referral. Experts say that it is wise to begin these services early in your care.
Do You or a Loved One Have a Progressive Neurological Disease?
Persons with PNCs and their families face special legal and financial needs. Controlling the high costs of caring for a loved one with a PND, and navigating the emotionally and physically demanding requirements of care giving require the assistance of a highly skilled and specialized expert in the field of elder law.
For an initial consultation:
Fairfax Elder Law: 703-691-1888
Fredericksburg Elder Law: 540-479-1435
Rockville Elder Law: 301-519-8041
DC Elder Law: 202-587-2797
About Evan H Farr, CELA, CAP
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