Having a parent newly diagnosed with Alzheimer's disease can be a surprise—or the diagnosis may confirm suspicions of memory loss. While grandma or grandpa may have been diagnosed with Alzheimer's, hope that the disease might have left mom or dad untouched may have existed.
Now that you have the news—you may be wondering what to do next. Accepting the diagnosis is the first step followed by learning how a parent's memory and health will change over time, financial and legal planning, investigating care options, and understanding the effects of caregiving—especially on the healthy parent who will eventually become the full-time caregiver.
Accepting the Diagnosis
Accepting the diagnosis fosters ongoing family discussions. For example, if a parent's memory loss is in the early stage, mom or dad can participate in discussions and share wishes for care. However, if diagnosed later, a parent may be unable to understand the consequences of the situation. In that event, a spouse or adult child may bear the responsibility for planning and making decisions.Some adults were exposed as children to angry or frightening dementia-related behaviors of a grandparent living in the family home. If the family was unaware or did not have open conversations about the diagnosis, adults may carry memories of unintentionally harmful or abusive behaviors by grandparents. As a result, these recollections may lead children to decline to care for aging parents whom they feel did not protect them from traumatic situations when they were young.
Accepting the diagnosis also means it is essential to suspend judgment about a family member's willingness to participate in discussions or become involved in care. Extending compassion allows everyone to feel heard and leaves the door open for future involvement as the care needs of a parent increase.
Planning for the Future Care of a Parent Newly Diagnosed with Alzheimer's
Discussing forgetfulness with a parent can be a tender subject. Some families feel challenged to initiate discussions about Alzheimer's disease when a parent wishes to avoid the topic. Scheduling a visit with the doctor to discuss the progression of memory loss can take the pressure off a spouse or children to move conversations forward.In addition, while a primary care physician may make an initial diagnosis, a follow-up appointment with a neurologist and a neuropsychologist can allow a beneficial in-depth analysis. You might be wondering why make this extra effort when you already know the diagnosis?
Requesting A Thorough Medical Evaluation
Having a thorough evaluation of memory loss supports legal planning and care planning. Legal planning ensures that a parent's wishes will be carried out when advancing memory loss increases the difficulty of making medical or financial decisions. Care planning means identifying options for care and considering potential financial expenses.Has your parent completed legal planning by executing a medical and financial power of attorney, a living will, a will, or a trust? If not, taking this step immediately upon a diagnosis of Alzheimer's disease is a time-sensitive matter.
Providing a neurological or neuropsychological evaluation can help substantiate whether a parent has the legal capacity to direct an elder law, estate planning, or probate attorney to create their legal plan. If a parent's memory loss is advanced, taking steps to pursue guardianship or conservator through the court system is likely the next step.
Understanding Behaviors
The knowledge provided by a neurological evaluation can help family caregivers understand the mental challenges experienced by a parent newly diagnosed with Alzheimer's disease. For example, a mom or dad may become more confused or agitated at particular times of the day or when asked to participate in certain activities like bathing.An in-depth evaluation can confirm mental strengths and weaknesses related to task sequencing, organizational abilities, and performing routine activities. Armed with this information, the caregiver can create a plan to help a loved one be active as long as possible without taking away tasks that support self-sufficiency and self-esteem.
A parent with Alzheimer's may also exhibit repetitive or aggressive behaviors. Family caregivers who learn to modify their responses to a parent with memory loss can be sensitive not to cause a parent to become unnecessarily agitated.
Managing Health Changes
While the experience of Alzheimer's disease progresses differently, ongoing medical care and memory loss evaluations allow families to prepare and pivot when additional care is needed. For example, mom or dad's health may be stable and suddenly experience a downturn after being diagnosed with a urinary tract infection or pneumonia.Having a plan for basic care options and additional services gives caregivers peace of mind. For example, receiving support from an in-home caregiver with meal preparation, personal care, medication reminding, light housekeeping, or laundry offers family caregivers a much-needed break. If family caregivers work full time, another option may be taking advantage of adult day programs offering activity programs or outings for persons with memory loss.
Avoiding Burnout
Caregivers of loved ones with Alzheimer's disease increasingly experience mental and physical burnout due to full-time, non-stop care activities. The stage of care when a loved one becomes entirely physically and emotionally dependent on the caregiver can be impossible to imagine when a parent is newly diagnosed with Alzheimer's.However, when considering care needs and expenses, it is essential to keep the end in sight. While primary caregivers often say they are doing fine, establishing regular support systems is beneficial before burnout begins, as is having a plan for when the caregiver can no longer be the caregiver.
Combining the services of in-home care and an adult day care program can help manage financial costs and offer positive routines for a parent to support mom or dad's desire to remain at home as long as possible. Even when a transition to a private care home or an assisted living community is a practical next step, transitioning with the support of a paid caregiver maintains a sense of connection and provides ongoing oversight for the family.
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About Pamela D. Wilson
PAMELA D WILSON MS, BS/BA, NCG, CSA is a national caregiving expert, author, advocate, and speaker educating family caregivers, older adults, professionals, groups, and corporations. Since 1999, Pamela has been an entrepreneur and business owner providing direct service: in-home care, care management, and legal and financial appointments. In addition, she consults about elder care, care navigation, caregiving services, and caregiver support programs with families, health and care providers, attorneys, and financial planners.
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