Your Guide to Navigating the Progression of Alzheimer’s Disease as a Caregiver

As Alzheimer’s disease progresses from mild to moderate and then to severe stages, various signs can indicate that it’s worsening.

Here are the key symptoms to watch for as the disease advances:

Moderate stage symptoms

• Memory loss and confusion: increased difficulty remembering personal history, recognizing familiar faces, and finding words
• Difficulty performing daily activities: a need for help with dressing, bathing, and grooming
• Personality and behavioral changes: mood swings, suspicion, delusions, repetitive behaviors
• Sleep pattern changes: daytime sleepiness and nighttime restlessness
• Wandering and getting lost: an increased tendency to wander
• Bladder and bowel control issues: difficulty managing these bodily functions

Severe stage symptoms

• Loss of communication ability: limited to a few words or phrases
• Loss of environmental awareness: lack of response to surroundings
• Significant physical decline: difficulty walking, sitting, and swallowing
• Increased vulnerability to infections: higher risk, especially for pneumonia
• Total dependence on caregivers: requiring round-the-clock assistance

As Alzheimer’s progresses, building a strong support system is crucial for both the person with Alzheimer’s and their caregivers.

This network can provide emotional support, practical assistance, and respite care, reducing the burden on primary caregivers and enhancing the quality of life for everyone involved.

Here are some ways to build a support system:

• Involve family and friends: Communicate openly with family members and friends about the situation and encourage them to participate in caregiving activities.
• Seek counseling: Individual or family counseling can help address emotional challenges and improve coping strategies.
• Join support groups: Participating in local or online support groups for caregivers and people with Alzheimer’s can allow you to share experiences, gain insights, and find comfort in knowing you’re not alone.
• Consider respite care: Respite care services, such as adult day centers and temporary in-home care, can give primary caregivers much-needed breaks.
• Plan for long-term care: Explore long-term care options, such as assisted living or memory care facilities, to prepare for future needs.

Financial and legal planning for a loved one with Alzheimer’s is important to ensure that their care needs are met and to protect their assets.

Studies show that people ages 65 years and older live an average of 4 to 8 years after a diagnosis of Alzheimer’s dementia, but some can live up to 20 years with the disease. This underscores the importance of long-term planning.

Here are the key steps and considerations:

Financial planning

• Assess current finances: Review all income sources, savings, investments, and expenses to understand the financial situation.
• Create a budget: Develop a budget that includes current and future care costs, such as those for prescriptions, medical treatments, caregiving services (in-home care), and long-term care facilities.
• Explore insurance options: Check existing insurance policies and consider long-term care insurance if it’s available. Medicare and Medicaid can also help cover costs.
• Look into government programs: Investigate programs such as Social Security Disability Insurance and Veterans Affairs benefits.
• Plan for future care: Estimate future costs for different stages of care, including home modifications and potential nursing home care.
• Set up automatic payments: Ensure that bills and care expenses are paid on time by setting up automatic payments and direct deposits.

Legal planning

• Establish power of attorney: Designate a trusted person who can make financial and healthcare decisions on behalf of the person with Alzheimer’s when necessary.
• Create or update a will: Make sure the person’s will is up to date and reflects their current wishes regarding asset distribution.
• Set up advance directives: Include a living will and healthcare proxy to outline care preferences, and appoint someone to make medical decisions if the person cannot do so.
• Consider a living trust: This can help manage assets and avoid probate (the legal process of distributing a deceased person’s assets), ensuring a smoother transition of asset control.
• Guard against fraud: Protect the person’s finances from potential fraud or exploitation by monitoring accounts and setting up alerts.
• Consult with professionals: Work with financial planners, elder law attorneys, and estate planners to navigate the complexities of planning and ensure that all legal documents are properly prepared.
• Seek free or low cost resources: If professional help is difficult to afford, look for community organizations, nonprofits, and legal aid services that offer help with financial and estate planning. You can also use online tools and templates to prepare necessary legal documents.

Caring for a loved one with Alzheimer’s can be physically and emotionally demanding. It’s crucial that you prioritize your own health as well.

Here are some tips for managing your health and incorporating lifestyle changes.

Prioritize physical health

Attend regular medical checkups to catch potential health issues early. Incorporate physical activity, such as walking, yoga, or swimming, into your routine to boost energy and reduce stress. Try to eat a balanced diet to help sustain your energy levels and support your overall health.

Manage stress and mental health

Practicing relaxation techniques such as deep breathing and meditation may help you manage stress. To avoid feeling overwhelmed, set realistic goals, break tasks into manageable steps, and set aside time to engage in hobbies.

Build a support network

Stay connected with friends and family to prevent isolation. Join caregiver support groups for emotional support. Delegate tasks to others when possible.

Establish and simplify routines

Simplify your life by reducing unnecessary commitments and focusing on what’s most important. Create a daily routine and use technology, such as caregiving apps, to efficiently manage medications, appointments, and daily tasks.

Take regular breaks and practice self-compassion

Use respite care services to take breaks for self-care. Be kind to yourself and acknowledge that it’s OK to feel stressed or overwhelmed sometimes. Seek professional counseling if needed.

Research shows that caregivers of people with Alzheimer’s experience a complex spectrum of challenges, including burnout and exhaustion, alongside opportunities for personal growth.

It may be beneficial to address both of these aspects when managing your health. Take advantage of respite care to reduce burnout, but also consider the personal growth opportunities that caregiving can offer.

Preparing the home of someone with Alzheimer’s is crucial to ensure their safety, support their independence, and help them maintain daily routines.

Here are some steps you can take:

• Safety modifications: Install grab bars in bathrooms and near stairs, remove tripping hazards such as loose rugs, ensure adequate lighting with nightlights, and consider door alarms to prevent wandering.
• Technological aids: Use medication reminders with alarms, install monitoring systems for safety, and explore smart home technology for daily tasks.
• Communication aids: Label cabinets and rooms clearly, use large-display calendars and clocks, and simplify the environment to minimize confusion.
• Emergency preparedness: Keep emergency contacts handy, have a plan for emergencies, and educate household members on Alzheimer’s symptoms and responses.

You’ll know it’s time to transition a loved one with Alzheimer’s to professional care when their needs are greater than you can manage at home.

Here are some changes to look for:

• increased safety risks such as frequent falls and wandering
• behavioral changes such as aggression and severe anxiety
• co-occuring medical issues requiring specialized care
• caregiver burnout and severe stress
• difficulty with daily activities such as bathing and dressing
• increased nighttime restlessness
• social isolation and withdrawal
• challenges in medication management
• a decline in personal hygiene and cleanliness

Tips for evaluating a facility

When choosing a facility for a loved one with Alzheimer’s, consider the following factors:

• Staff qualifications and interaction: Make sure that staff are well trained in dementia care, compassionate, and attentive. Observe their interaction with residents.
• Cleanliness and safety: The facility should be clean, well maintained, and free of hazards. Check for safety features such as secure exits and handrails.
• Personalized care: Look for individualized care plans that cater to the specific needs of people with Alzheimer’s, including medical, emotional, and social aspects.
• Engaging activities: Make sure there are structured activities and programs designed to stimulate and engage residents, tailored to different stages of Alzheimer’s.
• Medical services: Verify that the facility provides comprehensive medical care, including regular health checkups, medication management, and access to specialists.
• Nutrition and meals: Check that the facility offers nutritious meals tailored to the dietary needs of people with Alzheimer’s and that dining areas are pleasant and supportive.
• Family involvement: Look for a facility that encourages family participation and keeps families informed about their loved ones’ condition and care.
• Resident-to-staff ratio: A lower ratio often means more personalized attention and care for each resident.

End-of-life planning for your loved one with Alzheimer’s can be emotionally challenging, as it involves facing the reality of declining health and inevitable loss.

It’s best to start early, ideally when your loved one can still participate in decision making and express their preferences. Early planning allows for thoughtful consideration of medical care, hospice options, and emotional support, ensuring that the person’s wishes are respected and the transition is as smooth as possible.

By addressing the following aspects, you can help ensure a dignified and compassionate end-of-life experience for your loved one:

Hospice care

Explore hospice care options early. Hospice care focuses on comfort and quality of life in the final stages. It provides comprehensive support, including medical care, pain management, and emotional support for the person with Alzheimer’s and their family.

Management of pain and symptoms

Work closely with healthcare professionals to manage pain and other symptoms. This may involve medications, therapies, and comfort measures to ensure that your loved one is as comfortable as possible.

Funeral arrangements

Discuss and plan funeral arrangements in advance. Understanding your loved one’s wishes regarding burial, cremation, or memorial services can ease the decision making process later on. Consider involving a funeral director to help with planning and logistics.

Emotional support

Seek emotional support for both your loved one and yourself. Counseling, support groups, and spiritual care can provide comfort and guidance. Encourage family members to share their feelings and support each other during this difficult time.

A comforting environment

Make sure that your loved one’s environment is soothing and familiar. Surround them with cherished items, play their favorite music, and maintain a calm, peaceful atmosphere to enhance their comfort and well-being.

Navigating the progression of Alzheimer’s in a loved one can be daunting, but there are ways to ease the journey.

Staying informed about the stages of the disease and its symptoms can help you anticipate and manage changes. Consider building a support network of family and friends to lean on when times get difficult.

Finally, try to approach each day with patience, compassion, and a focus on staying in the present moment. Your role is crucial and deeply valued.