Care and AssistanceExpand +
My loved one (or I) was just diagnosed with a degenerative brain disease. What do I need to know?
Degenerative brain diseases such as Alzheimer’s, Huntington’s, Parkinson’s, multiple system atrophy (MSA), frontotemporal dementia (FTD) or multiple sclerosis (MS) affect the person diagnosed as well as his or her entire family. Questions about disease symptoms and how to plan for care over the course of the illness are common. Many newly diagnosed individuals and their families find it beneficial to assemble a team to provide guidance and support. Team members may include physicians and other health care providers, social workers, attorneys and community service providers. Patients and families may have questions about disease symptoms and the steps to plan for care over the course of the illness. Access to information and support also can help, which may include disease-specific books, educational programs, support groups or one-to-one counseling. Those who live in or near Las Vegas can get help through our no-cost social services. Assistance is also available through the local Aging and Disability Resource Center and national non-profit disease-specific organizations.
My loved one (or I) would prefer to live independently
Most individuals with a degenerative brain disease prefer to remain at home for as long as possible. As the illness progresses, there are many factors to consider, such as: Can the individual adequately perform daily care tasks? Is the environment safe? Are home modifications needed? Can medications be taken as prescribed? Planning is often the key. Assistance from social workers, care managers and community-based support services such as in-home care and adult day care, along with the support of family and friends, can help the individual remain independent for as long as possible. Those who live in or near Las Vegas can get help through our no-cost social services. Assistance with planning for care is available through the local offices of the Aging and Disability Resource Center and national non-profit disease-specific organizations.
How do I find information on programs that can assist with care?
Programs are available to assist with providing care and support for individuals with a degenerative brain disease. While each person’s situation may differ, examples of programs that may help are:
- Aging and Disability Resource Centers (specific to each state)
- Area Agency on Aging (specific to each state)
- Veterans Administration
- Medicaid (specific to each state)
Non-profit disease-specific organizations
- Alzheimer’s Association
- National Multiple Sclerosis Society
- American Parkinson Disease Association
- Huntington’s Disease Society of America
What are my options to help pay for care?
Often, more than one resource will be used to pay for care over the course of a degenerative illness. Options may include self-pay, long-term care insurance, Medicaid (income-based determined by each state) and the Veterans Administration. Family and friends also can assist with the cost or provision of caregiving tasks.
Assistance with planning for care is available nationally through the local offices of the Aging and Disability Resource Center (ADRC) and national non-profit disease specific organizations.
Common ChallengesExpand +
My loved one is experiencing difficulties
A person diagnosed with a degenerative brain disorder such as Alzheimer’s, Huntington’s, Parkinson’s, multiple system atrophy (MSA), frontotemporal dementia (FTD) or multiple sclerosis (MS) may experience difficulties due to disease-related changes in the brain. Problem areas can arise related to remembering information, thinking clearly, communicating and completing complex tasks including household chores and personal care. At times, the individual may not seem to be aware of or acknowledge these changes. Below are examples of common situations:
- Asks the same question more than once
Individuals with short-term memory loss may struggle with remembering they have asked a question or made a statement.
Tips: Use prompts and frequent reminders, convey small bits of information with simple words, respond in a comforting tone and with positive body language, try to distract the individual with activities or change the topic of conversation.
- Forgets to bathe or take care of personal care tasks
Changes in the brain can alter a person’s ability to accurately remember the last time an activity took place or perceive the need to attend to personal hygiene. There may also be changes in balance or motor skills that make these tasks more challenging.
Tips: Keep to the person’s usual personal care routine as consistent as you can. Choose a time of day when person is likely to be doing well, set out items needed for bathing or personal care tasks, watch for things that are difficult or upsetting to the person and adapt activities.
- Is unwilling to go to the doctor
Caregivers commonly report this situation. Although it is not fully understood, some explanations include: the individual perceives everything is okay therefore there is no need to see a doctor; the patient find a doctor’s visit upsetting or outside of his usual routine.
Tips: Talk with your doctor about the situation; offer reassurance and comforting words to your loved one; and schedule appointments at a time of day that is usually best for your loved one.
- Perceives a situation in a way that is not consistent with facts
Changes in memory, understanding and communications that occur in an individual with a degenerative brain disorder can lead to alternate interpretations of situations. Caregivers may believe that this behavior is deliberate or they may attempt to reason with the individual. It is rarely helpful to argue or try to persuade the individual.
Tips: Understand that these types of behaviors may be due to disease-related changes in the brain. Ask for guidance from your doctor and other trained professionals to address specific situations. Re-direct actions as feasible and watch for situations that trigger these behaviors. Create your own “tool box” with techniques you have found to be effective.
At times, my loved one’s behavior is a challenge
A person diagnosed with a degenerative brain disorder can experience changes in personality and behaviors due to disease-related changes in the brain. These types of changes may be difficult to understand and deal with effectively. Below are examples of common situations:
Aggression, anxiety, agitation, confusion, paranoia and verbal outbursts are some of the behaviors that can be associated with a degenerative brain disorder. Caregivers often cite these types of behaviors when an individual is diagnosed with Alzheimer’s or other forms of dementia. With changes in language skills, certain behaviors may be used to communicate physical discomfort, frustrations, fears or lack of understanding.
Tips: Consult with your doctor about behavior changes, learn about the common behavior challenges and ways to cope, seek outside support from professionals and others who have experienced similar situations, develop a “tool box” of techniques that have worked in past situations, and address issues related to safety for the person and family members.
Apathy can include loss of interest in participating in activities, withdrawal from social interactions and indifference. It is a common behavior in degenerative disorders and thought to result from both changes in the brain and how the person responds to the diagnosis.
Tips: Consult with your doctor about your loved one’s apathy. Try to find activities that the person enjoyed prior to developing disease symptoms and modify them as needed to encourage participation. Also, consider different approaches when asking the person to participate in activities and respond to a “no” with support and reassurance; asking again at a later time may be successful.
- Risk of wandering
Wandering is a common behavior for those with a cognitive impairment such as Alzheimer’s disease. A person can easily become lost or disoriented, unable to find his or her way back home. If a person wanders frequently, it may be helpful to see if there are circumstances that appear to trigger this behavior.
Tips: Diminish risk by doing a safety check of the doors and windows in the home and create an action plan in case the person wanders out. Have a recent photo of the person and consider ID bracelets, clothing labels or GPS monitoring devices. Plan for activities and exercise throughout the day to keep the person active.
Driving is a complex activity that requires quick thinking and reactions, as well as good perceptual abilities. Degenerative brain diseases can cause changes in the brain that reduce someone’s capacity to drive safely. Sometimes, the person may not recognize that there have been changes in cognitive function, judgment or motor skills essential for driving. Warning signs of these changes can vary from person to person and may include:
- Getting lost in familiar places
- Not observing traffic signs or following traffic rules
- Difficulty making decisions
- Loss of ability to stay alert and/or easily distracted
- Getting into accidents and/or getting traffic tickets
It is important to seek input and advice from health care professionals. It may be helpful to have conversations with the individual, explore community transportation options and schedule a driving skills test. Sources for additional information include: Alzheimer’s Disease Education and Referral Center, Eldercare Locator, American Association of Motor Vehicles Administrators and the National Highway Traffic Safety Administration.
I need a break
Taking a break from caregiving is important for the health and wellbeing of the care recipient and caregiver. This is similar to being instructed to put your oxygen mask on before assisting others; we have to take care of ourselves in order to be helpful to others. It is easy to forget or feel guilty about taking time for ourselves. We may feel there are too many demands on our time in addition to the stresses and strains of caregiving.
- While we may not be able to change the situation, here are some things to consider:
- Plan regular breaks from caregiving tasks
- Take steps to reduce stress
- Ask for and accept assistance with caregiving tasks
- Spend a few minutes every day doing something of your choice
- Focus on self-care – eating right, exercising and getting a good night’s rest
- Talk with someone such as your doctor, social worker or clergy about your situation
Those who live in or near Las Vegas can get help through our no-cost social services (add link to Patient & Caregiver overview page). Additional information on caregiving programs nationwide is available through the National Family Caregiver Support Program under the U. S. Department of Health and Human Services.
As a caregiver, I experience feelings of guilt
Guilt is a common emotion experienced by caregivers. There can be many reasons for these feelings. Caregivers may express guilt over competing demands on their time, spending time away from their caregiving role while doing something they enjoy, trying to understanding why a loved one became ill, and meeting the expectations of others. While each situation is different, there are tips that caregivers have found helpful in addressing feelings of guilt:
- Understand that you may experience these feelings at times
- Focus on the positive aspects of the care and support you are providing your loved one
- Revisit expectations to create realistic and manageable priorities and “to-do” lists
- Recognize that the person you are caring for has a degenerative illness that will progress over time
- Accept assistance from others
- Give yourself the gift of time off from caregiving responsibilities
- Talk with others who understand the challenges of caregiving
Those who live in or near Las Vegas can get help through our no-cost social services (add link to Patient & Caregiver overview page). Additional information on caregiving programs and supportive services nationwide is available through the U. S. Department of Health and Human Services, National Family Caregiver Support Program.
I live in a different state than my loved one and am having difficulty managing long distance caregiving
It can be very challenging to manage caregiving tasks from afar. Many individuals with degenerative brain disorders and their families find it beneficial to create a team to help provide care and support. Team members can be healthcare providers, social workers, geriatric care managers, community service providers, family members, friends and neighbors. Some organizations have established online tracking and monitoring tools that can be helpful resources. Websites such as Eldercare Locator can assist in identifying local resources and offer fact sheets and tool kits. Many online publications offer in-depth information and guidance, such as the National Institute on Aging’s So Far Away: Twenty Questions and Answers About Long-Distance. In Las Vegas, this resource and others – along with guidance from trained library volunteers – are available at the Center’s Lending Library. View our catalog online. (link to Lending Library page).