Unraveling the Uncertainties of an Early Dementia Diagnosis

Learning that a loved one has been diagnosed with dementia or receiving the news of your own dementia diagnosis can be a disturbing experience. Facing such a heartbreaking experience can be challenging, and we may not always know what to do.

Bilingual gerontologist and dementia care consultant, Licet Valois, shares some valuable insights and tips to start the process of caring for oneself and others when dealing with an early dementia diagnosis.

Facing the Dementia Diagnosis

Having faced this reality myself, I can attest to the profound emotional effect either one of these situations can have on people’s lives. This diagnosis can trigger a range of mixed emotions and a significant amount of uncertainty, as one does not know what the future might hold. I have noticed the profound distress experienced by relatives, partners, friends, and individuals themselves upon receiving this difficult diagnosis. Conversely, I have also noticed the sense of relief and validation experienced by individuals after finally learning the reason behind the confusing and stressful interactions with a loved one.

After supporting families affected by dementia for many years, I have discovered that the reactions and responses to the delivery of a dementia diagnosis are unpredictable and vary greatly from person to person. Regardless of their role or identity, it is difficult to predict how someone might behave or respond to the news of such a diagnosis. The feelings and emotions people experience, along with their reactions and responses, are as unpredictable as the symptoms of dementia itself. Dementia is a complex neurological condition that requires medical care, but it also requires proactive and practical approaches to address the needs of everyone involved.

Our differences in education, socioeconomic status, past experiences, cultural values, and beliefs influence our responses and behaviors when coping with a dementia diagnosis. Besides shaping our responses, all these factors also highlight our uniqueness as care partners or individuals diagnosed, and subsequently, guide future care plan decisions. Whether it is Alzheimer's disease, Parkinson's dementia, Lewy Body, or any other type of dementia, who we are and what we believe in, determine the way we cope with the challenges, intricacies, and unpredictability always present with these conditions.

Our Responses Matter

Ideally, after a dementia diagnosis, individuals should be supported to start arming themselves with knowledge and practical tools as early as possible. However, if they choose not to engage right away, they should be respected and empowered to proceed when ready to do so. In some cases, individuals may need time to process their situation, as they must approach this journey according to their own needs and abilities. Undeniably, some people may feel emotionally vulnerable and struggle to make decisions or implement them. Conversely, other people might take a more immediate and proactive approach, actively seeking support and planning for the future.

Seeking and accepting support after this diagnosis means recognizing that there are needs to be satisfied, even if we cannot fully define them. This stance means that we need to engage others in this new journey of care. Adopting this approach offers an opportunity to build a support network, which includes planning collaborations among care providers, care partners, and the individual diagnosed. By approaching the care journey in this way, we ensure proactive access to comprehensive, person-centered care for both the individual diagnosed and their care partner, rather than resorting to reactive care as the disease progresses. This approach empowers both care partners and individuals diagnosed to take control, ensuring their care decisions align with their preferences and desires.

It can be very beneficial to assume a proactive care approach and plan for the future, given the uncertainty surrounding this diagnosis. However, how does one plan for an unpredictable disease that affects individuals in unique ways? What should one prepare for, and how much should one be prepared?

Tips to Start Building a Roadmap

Although every case and family is different, implementing these strategies tends to be helpful for most:

• Family Conversations: It may be helpful to start by having family conversations that include the individual diagnosed and those who are already informed or will be informed of the diagnosis. While in a supportive and familiar environment, this approach can facilitate emotional and mental processing, whether the dementia diagnosis was expected or unexpected.
• Shared Decision Making: It will be important to allow open participation and make shared decisions without exclusion. This position will promote respect and transparency, contributing to the preservation of individuals' sense of independence and control.
• Building a Support Network: Besides care professionals, more people can join our trusted support network, as we share the diagnosis with others. We don’t have to navigate the dementia care journey alone; doing so can lead us to a lonely experience, either by choice or circumstances.
• Lifestyle Modifications: Modifying our lifestyle and changing our unhealthy behaviors will have a significant impact as we embark on a healthier way of living for our brain and body.
• Care Planning: Identifying and discussing care options and living choices, sharing wishes and legal and financial preferences, and designating trusted partners in care are key considerations for everyone involved in the care journey.

To navigate these aspects more effectively, we need to educate ourselves through different means. It will be helpful to learn about the diagnosis by attending lectures, reading materials, and connecting with organizations that provide services and resources related to dementia. Care partners and individuals diagnosed can engage in this learning together or separately. Another valuable way to learn would be joining support groups, which provide psychoeducation, information about resources, and critical emotional support.

In addition to the dementia organizations, one can also work with privately hired professionals who specialize in dementia care. These professionals, known as Geriatric Care Managers, typically have backgrounds in social work, nursing, law, and other related fields. They provide personalized support to understand the diagnosis better and develop and implement suitable care plans. Additionally, Geriatric Care Managers possess extensive knowledge to navigate the healthcare system and address the psychosocial needs of the care partner and the individual diagnosed.

The Takeaway

A dementia diagnosis marks the start of a new relationship with someone we love. While relationships can be challenging, they can also be filled with joy, love, respect, and meaningful memories. The goal will not be to achieve a perfect relationship, but rather one that reflects our caring and compassion for each other. At times, coping with dementia could feel like a battle with others and ourselves, but if we prepare with knowledge and embrace support, we will be better armed to fight back.

Let's start with a loving gesture towards ourselves and our loved ones – Let’s prepare to act proactively as the disease progresses, while educating ourselves about dementia and available resources.

By Licet Valois, LMSW, MPS, CDP

Behavioral Health Doctorate Student