A Caregiver’s Perspective on Embracing Love for Patients With Alzheimer Disease

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Eleonora Tornatore-Mikesh, chief executive officer of CaringKind, The Heart of Alzheimer's Caregiving, and an anonymous caregiver, spoke about their perspective with caring for a loved one who has been diagnosed with Alzheimer disease.

Eleonora Tornatore-Mikesh, chief executive officer of CaringKind, The Heart of Alzheimer's Caregiving

Eleonora Tornatore-Mikesh

Credit: Medium

Valentine's Day, held February 14, 2024, is an event that brings a feeling for celebration of love and connection between people. However, for caregivers navigating the complexities of Alzheimer disease (AD), this occasion may present some unique challenges. Caring for a loved one with AD often involves adapting routines, maintaining a supportive environment, and fostering understanding amidst cognitive changes. Around this holiday, its important to acknowledge and appreciate caregivers for their unwavering dedication and compassion to create moments of warmth for their loved ones with AD.

Eleonora Tornatore-Mikesh, chief executive officer of CaringKind, The Heart of Alzheimer's Caregiving, recently had a conversation with NeurologyLive® to share her caregiver perspective on loving someone with an Alzheimer diagnosis. She talked about how caregivers can adapt Valentine's Day celebrations for a family member with AD, considering their unique needs and limitations. She also shared some recommended, dementia-friendly activities that caregivers can engage in with their loved ones on this celebrated day of love. Also, she spoke about how her organization supports caregivers of patients with Alzheimer during special occasions like Valentine's Day and the services provided by them.

For an additional perspective, an anonymous caregiver from the organization shared their viewpoint on how Alzheimer diagnosis has impacted the dynamics of relationships, especially for caregivers in general, and shared on some of the emotional challenges that they might face in their evolving roles. The caregiver also spoke about considerations that other caregivers and partners should keep in mind regarding sexuality and intimacy as Alzheimer progresses, and how they navigate changes with compassion and understanding. In addition, the caregiver discussed how CaringKind provides support for caregivers facing challenges in different stages of the disease, and the resources they offer to address issues such as communication, intimacy, and emotional well-being.

Tips for Caregivers

  • Create a Comfortable Environment:
    • Maintaining a familiar setting, establishing routines, and limiting noise contribute to a calm and stable environment, reducing anxiety for individuals with cognitive challenges during holiday celebrations.
  • Inclusive Holiday Preparations:
    • Involving the person in holiday preparations, simplifying gift-giving, and adapting traditions fosters inclusion and helps create meaningful experiences that align with their abilities.
  • Prioritize Well-Being for Caregivers:
    • To ensure a positive holiday experience, caregivers should adjust expectations, have a care plan in place, and prioritize self-care, seeking support when needed to manage stress and maintain overall well-being.

NeurologyLive: How do you navigate expressing love and care for your family member with Alzheimer on this special day, and what advice would you share with other caregivers facing similar challenges?

Eleonora Tornatore-Mikesh: Expressing love and care for a family member with Alzheimer on Valentine's Day involves thoughtful, dementia-friendly activities that honor the bond you share, despite the challenges posed by caregivers. Valentine's Day can be a poignant reminder of the enduring love and connection between partners, but for those caring for someone with Alzheimer, it also requires sensitivity to the unique needs and limitations of their loved one. Engaging in simple, meaningful activities that can evoke positive memories is often recommended. This could include looking through old photo albums, enjoying their favorite music, or having a quiet, cozy meal together. The key is to keep the celebration stress-free and focused on shared, joyful moments that can bring comfort and reassurance to both the caregiver and their loved one.

For caregivers, it's crucial to adapt celebrations to the current abilities and preferences of the person with dementia. Small, thoughtful gestures, familiar activities, and the creation of a comfortable, loving environment can make a significant difference in their well-being and sense of connection. Caregivers may also find support from organizations like CaringKind NYC invaluable. CaringKind specializes in Alzheimer and dementia caregiving and offers a range of services, including a helpline, educational seminars, support groups, and more, to provide the necessary support and guidance.

However, it's essential for caregivers to approach Valentine's Day with sensitivity and awareness of their loved one's condition. For some individuals with Alzheimer, the concept of Valentine's Day or romantic relationships may be confusing or distressing. It's crucial to assess where they are in their disease progression and tailor celebrations accordingly. For example, if the person does not recall being in a relationship or if celebrations trigger anxiety or paranoia, it may be best to keep the observance simple and low-key. Caregivers can consult with CaringKind dementia specialists for personalized advice and assistance in navigating these complex situations.

In essence, the key to celebrating Valentine's Day with a loved one with Alzheimer is to approach it with empathy, flexibility, and understanding. By focusing on creating moments of connection and comfort, caregivers can honor the enduring love between partners while also providing the support and care needed for their loved one's well-being.

How has your relationship with your loved one evolved since their Alzheimer diagnosis?

Anonymous Caregiver: Following an Alzheimer diagnosis, relationships often undergo profound changes. Caregivers may find their roles shifting from partners or children to primary caregivers, which can alter the dynamics of the relationship significantly. Communication might become more challenging, leading to adjustments in how both parties express and understand affection and support. It's common for caregivers to experience a range of emotions, including grief, loss, and frustration, alongside moments of joy and deepened connections. The journey can lead to a new understanding and appreciation of the person with Alzheimer, highlighting the importance of patience, empathy, and love in navigating the challenges together.

Addressing sexuality and intimacy in the context of Alzheimer requires sensitivity and understanding. As the disease progresses, a person's cognitive changes can affect their sexual behavior and understanding of consent. It's important for caregivers and partners to navigate these changes with compassion, ensuring any sexual activity is consensual and considering the emotional and physical needs of all parties involved. Professional guidance from healthcare providers or therapists specializing in dementia care can offer valuable support in managing these complex issues.

Caring for a loved one with Alzheimer can be emotionally and physically demanding, leading to caregiver burnout and stress. Many caregivers neglect their own needs in favor of the person they are caring for, which can lead to feelings of guilt and isolation. It's essential for caregivers to prioritize self-care and seek support from friends, family, and community resources. CaringKind's support groups and educational classes provide caregivers with a supportive environment to share their experiences and learn practical coping strategies. Additionally, respite care services can offer temporary relief for caregivers, allowing them to recharge and attend to their own well-being.

Despite the challenges, caring for a loved one with Alzheimer can also be a rewarding experience. Finding moments of joy and connection amidst the difficulties can strengthen bonds and create lasting memories. Through patience, understanding, and access to support services, caregivers can navigate the journey with compassion and resilience, ensuring their loved ones receive the best possible care while also taking care of themselves.

Transcript edited for clarity. Click here to learn more about CaringKind.

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