Top 10 Priorities After Lewy Body Dementia Diagnosis

Receiving a Lewy body dementia (LBD) diagnosis can be overwhelming, both for the patient and their loved ones. That’s because, like Alzheimer’s and other types of brain disorders, there’s no cure for it.

LBD is a progressive condition caused by abnormal deposits of protein, known as Lewy bodies in the brain, which interfere with normal cognitive functions. While a diagnosis can feel utterly distressing, prioritizing key areas can help manage the disease effectively and enhance the patient's quality of life.

LBD Cases in the US Reach Millions

LBD affects approximately 1.4 million individuals in the United States alone, making it one of the most common types of progressive dementia. Early LBD symptoms can vary widely, but they often include the following:

• Cognitive changes: These may include difficulties with memory, problem-solving, or decision-making. Individuals with Lewy disease may experience fluctuating attention and alertness, leading to confusion or disorientation that can come and go unpredictably.
• Sleep disturbances: Parasomnia (e.g., acting out dreams during REM sleep) also occurs frequently and may appear long before other symptoms.
• Autonomic dysregulation: It manifests through abnormal blood pressure, heart rate, and digestion and can result in fainting spells, dizziness, or gastrointestinal problems.
• Neuropsychiatric features: They’re also common in diagnosed patients. Your loved one may experience depression, anxiety, and vivid visual hallucinations.
• Movement changes: Mobility issues resembling symptoms of Parkinson’s disease, such as stiffness, tremors, or shuffling gait, often cause delays in accurate diagnosis.

Recognizing these varied and overlapping disease precursors early is crucial for effective management, care planning, and LBD treatment.

Prioritizing Care After an LBD Diagnosis

Getting diagnosed with Lewy body dementia is life-changing. It can bring your family together and strengthen your bond as you strive to support one another. Creating a comprehensive nursing care plan for dementia can make the path forward more manageable.

By focusing on key areas, patients and their caregivers can navigate this challenging health journey with greater confidence and less pressure. If you or someone you know has been diagnosed with LBD, consider these 10 priorities to reduce the burden of the disease.

1. Understand the Diagnosis

Educate yourself about LBD symptoms and their trajectory. Why? You can provide better support for a loved one if you know a thing or two about the disease. Additionally, learn the stages of LBD to be clear about what to expect and how to prepare for the future.

Common symptoms include cognitive decline, visual hallucinations, motor impairments, and sleep disturbances. Their severity may vary for every patient. Besides these hallmarks, make an effort to learn the difference between LBD and other forms of dementia, such as Alzheimer’s or Parkinson’s disease. These conditions may share some symptoms. However, if you know what sets one apart, you’ll easily recognize the unique challenges specific to LBD, allowing you to tailor the care provided.

Additionally, stay informed about potential changes in your loved one’s behavior or overall health. Doing so can help you respond proactively rather than reactively. Knowledge empowers the patients, their families, and the care team to plan for medical, emotional, and practical needs effectively.

2. Build a Support Team

An effective support team is like a well-oiled machine. Each member has a role in keeping the engine running. The principle is similar when building your care team. It must consist of professionals who specialize or have experience treating types of dementia. Each has unique expertise that allows them to contribute to improving the patient's quality of life, whether that support will come from a therapist or a neurologist.

How do you find helpful people? Search for “dementia or Alzheimer specialists near me” online. If you fail to get some results this way, ask your primary doctor for a referral. A multidisciplinary team can guide the treatment more effectively, from medications to supportive therapies.

3. Develop a Care Plan

The right nursing care plan for dementia is essential for reducing the patient's pain and stress. This treatment blueprint should address physical and cognitive needs, including mobility assistance, medication support, and strategies to reduce agitation or confusion.

It must also be customized according to your loved one’s level of care demands. More importantly, it must include contingency strategies for addressing sudden changes in health or behavior. This ensures caregivers are prepared for unexpected situations.

Once a month or so, sit with your doctor to review and update the care plan. It should align with the patient’s evolving needs.

4. Focus on LBD Treatment Options

While there is no cure, certain medicines to treat dementia can alleviate symptoms. Cholinesterase inhibitors, for example, may delay cognitive decline and the risk of mortality. Consult your doctor regularly to get the latest updates on LBD treatments. Doing this also ensures ongoing treatments remain effective as the disease progresses.

5. Address Personal Care Needs

Dementia and personal care present unique challenges, particularly in managing daily hygiene and nutrition. Establish daily routines that allow caregivers to provide discreet care without intruding on your loved one’s privacy and disrespecting their dignity. Try using assistive devices or modify the living environment to increase your loved one’s independence. This way, they can do some tasks on their own, giving them more autonomy and control of their routines.

6. Prepare for Long-term Care

Early planning for dementia and long-term care can prevent future stress. Explore residential care options, in-home care services, or memory care facilities that specialize in LBD. Alternatively, talk with a dementia care advisor for guidance on navigating senior living options. Preparing for this ensures a smoother transition from home to a community when additional care support becomes necessary.

7. Establish Legal and Financial Plans

Consult legal experts to prepare or update documents, such as power of attorney and advance directives. Planning for future financial needs, including dementia and long-term care expenses, reduces stress and ensures the patient’s wishes are honored.

Don’t forget to review existing insurance policies, including health and long-term care coverage, to understand what benefits are available to you. If you need help, consult with a dementia care advisor who can discuss estate planning and eligibility for government assistance programs. They can help secure funds for ongoing care.

8. Engage in Meaningful Activities

Stimulating the mind and body can improve the quality of life. Receiving an LBD diagnosis isn’t the end for your loved one. They can live for up to 20 years after being diagnosed. Maximize this time by encouraging them to participate in activities that spark their interest and add meaning to their life.

Whether music therapy or gentle exercise, engaging in purposeful activities promotes well-being. Gardening, doing puzzles, or reminiscing over photo albums can bring a sense of comfort and positive vibes. Incorporate one or two enjoyable activities into your loved one’s routine to keep their enthusiasm for life going.

9. Involve Everyone in the Family

Education is key to providing adequate care. Attend support groups and read about dementia caregiving. Understanding the challenges posed by Lewy bodies in the brain can help families approach caregiving with empathy and patience. How? Talk with other family members about setting expectations and dividing responsibilities. Encouraging each person to contribute prevents caregiver burnout. Additionally, seek advice from professionals, such as counselors. They can help your family maintain a healthy relationship amidst a challenging time.

10. Prioritize Caregiver’s Health

Caring for someone with LBD is extremely demanding. Caregivers should be given time off from their care duties to prioritize their own physical and emotional health. Families can take turns caring for their loved one or hire a trained caregiver to replace the family caregiver for a short time. Respite care or joining support networks online can avoid burnout.

Creating a Plan After an LBD Diagnosis Can Help Families

Being diagnosed with Lewy disease can leave any family feeling helpless and confused. This health challenge marks the beginning of a journey that requires preparation and support. Focus on these ten priorities to help you navigate the complexities of the disease with resilience. Schedule a free consultation with one of our memory care advisors to get expert advice on senior living options, financing, and other dementia-related topics.

Syed Rizvi

Syed has years of experience dealing with people, understanding their needs, and helping them find solutions to their problems.
As a Certified Senior Advisor (CSA), Certified Dementia Practitioner (CDP), Certified Montessori Dementia Care Professional (CMDCP), Syed is committed to working closely with Senior and their family knowing what is it like for individuals facing a challenging time, at times groping in dark trying to figure what is the appropriate next step or care level for their unique situation.
Syed and Senex Memory Advisors are fully committed to working closely with families in creating a personalized, step-by-step process memory care plan at zero cost.