The "Cognition, Behavior and Caregiver Burden in ALS" study is investigating changes in thinking, behavior and mood that can occur in Persons with Amyotrophic Lateral Sclerosis (PALS). We are also interested in learning about how changes in thinking, behavior and mood in PALS affect their caregivers (e.g., spouse or adult child). Findings from this study may help to develop new ways to slow the progression of ALS and better coping strategies to help caregivers provide effective care for longer periods.
Any Veteran with ALS and their caregiver may participate in the study. Because this is a PALS/caregiver study, both PALS and their caregivers (also known as a dyad) will need to participate.
What will happen during the study?
Eligible PALS/caregiver dyads will complete brief semi-annual telephone and mailed surveys of cognition, mood and caregiver burden for up to three years. This may take about an hour of your time for each of you. Participation also involves permission to review enrollee's VA or non-VA medical records. Veteran PALS/caregivers in the Greater Boston/New England area may also be eligible for another version of this study involving in-person interviews.
PALS and their caregivers will receive $20 jointly at enrollment and every follow-up visit for their time and efforts.
The results of this study may help doctors and researchers better understand how ALS affects the mind and develop ways to reduce stress associated with caregiving.
For additional information about our study, click here to view our brochure
What is Amyotrophic Lateral Sclerosis (ALS; Lou Gehrig's disease)?
ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. ALS is a complex disease - it is often diagnosed by ruling out other diseases. The disease frequently begins in hands, feet or limbs, and then spreads to other parts of the body. As the disease advances, muscles become progressively weaker. This weakness eventually affects chewing, swallowing, speaking and breathing. ALS affects adults of all ages and racial backgrounds. The cause of ALS is unknown and there is currently no cure or effective treatment for the disease. PALS usually survive for 3-5 years after being diagnosed with the disease; however, a substantial number of PALS survive beyond 5 years.
Early signs and symptoms of ALS include:
- Gradual loss of ability to speak, swallow, and breathe
- Frequent tripping or difficulty with walking
- Weakness in the legs, feet or ankles
- Hand weakness or clumsiness
- Muscle cramps and twitching in the arms, shoulders and tongue
- Difficulty holding up the head or keeping good posture
Although for many years ALS was considered to affect only the ability to use one's muscles, we now know that ALS can also affect thinking, behavior and mood in a large proportion of PALS. Some of these changes are mild but some can become quite severe and lead to dementia. Some PALS experience these changes around the time that they begin to notice muscle changes, while others may develop these changes later on as their ALS symptoms progress. Presently, relatively little is known about who may be at risk for developing thinking, behavior and mood changes in ALS.
For more information about ALS, please click here.
Also, see our 10 ALS Facts Sheet.
What is Caregiver Burden?
Caregiver burden refers to perceived stress that may result from providing care to individuals (often family or friends) with serious conditions or illnesses. Some caregivers describe their experiences as rewarding and positive while others may experience negative effects of caregiving. For example, emotional, psychological, physiological, and financial strains are frequently reported areas of burden.
Caring for PALS may result in their caregivers experiencing the feeling of burden. Although considerable research has been conducted on factors contributing to caregiver burden in other neurological conditions such as dementia, much less has been done in ALS. Studies in ALS have shown that factors such as decreasing functional abilities, increases in behavioral problems, and symptoms of depression in PALS are related to increases in caregiver burden. Because caregiver burden affects both the caregiver and care recipient, our study aims to find ways that health care professionals can help caregivers manage and cope with the various stressors of caregiving. This will allow caregivers to care for their loved ones for longer periods, and will lead to improvements in the health of PALS and caregivers.
Symptoms and signs of caregiver burden include, but are not limited to:
- Nervousness and/or Anxiety
- Mood Swings
- Gastrointestinal upset or pain
- Heart palpitations
- Muscle soreness
- Difficulties concentrating
- Difficulties remembering
- Poor Nutrition and personal hygiene
For more information on caregiver burden, please click here
The study is supported by funding from the Research and Development Service of the Department of Veterans Affairs.
Frequently Asked Questions (FAQs):
Who is able to participate in this study?
In order to take part in this study, we will need both veterans with ALS and their primary caregivers to participate. A caregiver is anyone who provides care for you on a regular basis. This could be your spouse, your adult child, or other family member who cares for you throughout the day.
Will I need to do any travelling to take part in this study?
No, this study does not require any travel. All assessments will be done by phone or by mail once per year, or every six months for your caregiver. However, if you live in the Greater Boston/New England area you may be eligible for another version of this study involving in-person interviews.
I am interested in participating! What's next?
Great! We are very thankful for your participation. It is important to talk about participation with your caregiver, as he/she will also need to be involved in the study. If you have both discussed this and would like to take part, the next step will be for you to contact us. You or your caregiver may reach us at 857-364-2136 during business hours. If you are trying to reach us outside of these hours, please leave us your name and number and we will call you back the next business day.
How will the information that you collect from me be protected?
All of the information that is collected from you by our group will be labeled with a code that does not identify you directly, and will be kept confidential as required by law. The results of this study may be published for scientific purposes, but your records or identity will not be revealed unless required by law. Our study complies with the requirements of the Health Insurance Portability and Accountability Act (HIPAA) of 1996 and its privacy regulations and all other applicable laws that protect your privacy.
Interested in participating or learning more about the study?
Secure Fax: (617)-278-1348
VA Boston Healthcare System
150 South Huntington Ave. (151C)
Boston, MA 02130
If you wish to be contacted by our staff regarding our study, complete our "Permission to Contact" form and forward it to us by fax or mail.