Witnessing a parent succumb to dementia is already a heartbreaking experience for adult children. But for a growing number of families, the anguish doubles as both parents within a couple receive the same devastating diagnosis. This phenomenon, known as dual dementia, represents a rising challenge, impacting families emotionally, financially, and logistically.

As we continue to live longer, the risk of developing Alzheimer's or dementia naturally increases. And when both spouses are affected, the consequences can be overwhelming. The emotional toll on the couple is substantial as they witness each other's gradual decline in memory and cognitive abilities. This shared experience can be both heart-wrenching and isolating, as they navigate the challenges of daily life while facing their own cognitive limitations.

Double Jeopardy: Rising Rates of Dual Dementia Diagnosis Challenge Families

Estimates suggest that up to 25% of dementia cases occur in couples, translating to millions globally facing this intricate hardship. In the United States alone, over 6 million individuals already navigate Alzheimer's, with projections exceeding 13 million by 2050. Considering the prevalence of other dementia forms, the potential for dual diagnosis grows significantly.

Beyond Double Trouble

Caring for one person with dementia requires immense resources and unwavering support. When both partners are affected, the challenges become exponentially more arduous. Families are thrust into a whirlwind of complex care coordination, juggling financial burdens while grappling with the immense emotional strain of witnessing both parents decline simultaneously. The absence of one partner's support system, usually crucial for caregivers, further exacerbates the emotional and physical toll.

The impact on family members is also profound. Adult children often find themselves in the role of caregivers for both parents unless their parents have Long-Term Care Insurance, juggling the responsibilities of providing care, managing medical appointments, and making difficult decisions about their loved one's well-being. 

The family usually finds that they need professional help with in-home caregivers or memory care in a long-term care facility. This is the time they discover that health insurance, Medicare, and supplements will not pay for long-term care, leaving the financial responsibility on the care recipients. 

One of the most significant consequences of this dual diagnosis is the increased cost of long-term care. Alzheimer's and dementia care can be financially burdensome. When both spouses require assistance, the expenses can quickly deplete savings and retirement funds. This financial strain is exacerbated by the fact that Alzheimer's is a progressive disease, often requiring care for many years. 

If little income and assets are available, they may qualify for Medicaid. Otherwise, the responsibility remains on income and savings and family caregivers. 

The strain on family relationships can be immense, as siblings may have differing opinions on care options and financial matters.

A Delicate Dance of Loss

The human impact of dual dementia is nothing short of heart-wrenching. Picture a scene where two people who were once inseparable life partners who shared countless memories and dreams are now faced with the cruel reality of cognitive decline. 

It's a painful journey where they may reach a point where they no longer recognize each other, where the loving glances and whispered endearments that defined their relationship become distant echoes of the past. The emotional connection they once shared and the rock-solid support they offered each other through life's trials and tribulations all erode with the progression of the disease.

For their children, it's a profoundly agonizing experience. They are caught in a merciless paradox, witnessing both of their parents slipping away, slowly losing the essence of who they once were. These adult children find themselves thrust into the role of caregivers. This responsibility demands an emotional toll of its own. They must navigate the delicate balance between preserving their parents' dignity and ensuring their safety, all while coping with their own grief and distress. The pain of watching their loved ones fade away, coupled with the heavy burden of caregiving, can be utterly overwhelming.

The emotional upheaval and turmoil within these families are difficult to describe. It's a journey fraught with anguish, a relentless wave of grief that washes over them day by day. Yet, amidst the sorrow, there's often a fierce determination to provide the best care possible and to honor the love and commitment that defined the family unit for so long.

Beyond Awareness, Towards Solutions

While raising awareness and conducting research on dual dementia are crucial first steps, more needs to be done. Policymakers must actively address the specific needs of these families, offering respite care support, financial assistance, and readily accessible resources. 

Richard J. Hodes, M.D., director of the National Institute on Aging, National Institutes of Health, says research is moving forward, looking for answers.

Progress in Alzheimer's and related dementias research has been tremendous, and the momentum continues to grow.

Health care systems, in turn, require integrated care models tailored to couples with dementia, ensuring coordinated treatment and support.

Supporting families facing dual dementia demands a multifaceted approach. By acknowledging the rising numbers, understanding the intricate challenges, and advocating for comprehensive solutions, we can hope to alleviate the burden and offer a glimmer of hope in the midst of this shared decline.

Confronting Vulnerability

"Even in the early stages of the disease, we confront the vulnerability of someone who at one time we viewed as strong and powerful. The emotional consequences for adult children can seem endless and overwhelming," said Dr. Tamara McClintock Greenberg Psy.D., writing in Psychology Today. 

However, when both parents have dementia, the problem becomes even worse. Double the responsibility and double the pressure.

"I've seen a number of adult children that have not one but two parents with dementia," said Dr. Daniel I. Kaufer, a neurologist and director of the memory disorders program at the University of North Carolina in Chapel Hill, quoted in a New York Times story on this subject in 2007.  

Dr. Kaufer passed away in June of 2020, but his words and his work are still remembered. 

The Crisis Impacts Everyone

While some people have professional help either funded by Long-Term Care Insurance or self-funded from personal income and assets, many families are in crisis since their parents didn't think about planning or decided they didn't need Long-Term Care Insurance. 

Without a plan in place, adult children become caregivers despite being untrained and unprepared for the job. Family caregivers must juggle all their responsibilities and learn to cope with the physical and emotional demands placed on them.

Seeking Help to Cope

Carol Bradley Bursack, an author, columnist, consultant, and speaker, writes on agingcare.com that asking for help is key to coping. Bursack says to seek support from caregivers who have "felt what you are feeling and will not judge you for it." She writes that you should get professional help and suggest starting with the local Area Agency on Aging. 

Ways to Cope

Coping with Alzheimer's disease when both parents are affected can be an incredibly challenging and emotional journey for families. Caring for two parents with Alzheimer's is undoubtedly a complex and emotionally taxing endeavor. However, with the right resources, support, and a well-thought-out plan, families can provide the best possible care and improve the overall quality of life for their loved ones.

Here are some strategies that can help families navigate this difficult situation:

1. Seek Professional Guidance: Consult with health professionals who specialize in dementia care. They can provide valuable information, guidance, and support to help families understand the disease, plan for care, and manage its progression.
2. Check for LTC Insurance: Check records and see if loved ones purchased LTC Insurance. The policy will pay for care and provide other benefits to protect savings and ease family stress.
3. Develop a Care Plan: Work with health care providers to create a comprehensive care plan tailored to the unique needs of both parents. This plan should address daily routines, medications, safety measures, and access to appropriate support services.
4. Reach Out for Support: Don't hesitate to ask for help from friends, family members, or support groups. Caring for two parents with Alzheimer's can be overwhelming, and having a network of support can ease the burden.
5. Consider Respite Care: Taking care of two parents with Alzheimer's can be physically and emotionally exhausting. Explore respite care options, which provide temporary relief for caregivers, allowing them to rest and recharge.
6. Maintain Open Communication: Keep lines of communication open among family members. Regular family meetings can help ensure that everyone is on the same page regarding care decisions, responsibilities, and goals.
7. Focus on Quality of Life: While Alzheimer's is a progressive and irreversible disease, it's essential to prioritize the quality of life for both parents. Engage in activities that bring joy and comfort and ensure they maintain a sense of dignity and respect.
8. Adapt the Home Environment: Make necessary modifications to the home environment to enhance safety and reduce potential hazards. This includes installing handrails, securing sharp objects, and removing tripping hazards.
9. Stay Informed: Continuously educate yourself and your family about Alzheimer's disease and its management. Being well-informed can help you make informed decisions and better understand the challenges your parents are facing.
10. Self-Care: Caregivers often neglect their well-being while caring for loved ones with Alzheimer's. Remember that taking care of yourself is crucial. Seek support, practice self-care, and consider counseling or therapy to manage stress and emotions.

Getting help is essential for the caregiver and their family. Bursack writes that over thirty percent of caregivers die before the care recipient. She points out that some of these family caregivers are lonely, depressed, isolated, frustrated, and often torn by guilt. 

These caregivers can develop cancer, commit suicide, or have heart problems and other ill health that can likely be traced to the stress of caring for their loved ones.

The Alzheimer's Association does not track the number of couples where both partners have dementia. Some doctors think that the added stress of caregivers might accelerate the decline of the second spouse.

Being Prepared Now Reduces Family Crisis Later

Perhaps the best way to avoid placing this stress on your family is preparation. However, too many people put off the discussion of Long-Term Care Insurance because they think they are too young to obtain coverage or wrongly believe it is too expensive.

Today, most people obtain Long-Term Care Insurance in their 40s or 50s. Yet, if you have reasonably good health, you can find affordable options in your 60s and even beyond. Be sure to speak with a specialist representing all the top-rated insurance companies offering long-term care solutions to find affordable options based on your age and health. 

• How Much Does Long-Term Care Insurance Cost?

However, what do you do if you are in a crisis right now? How do you provide the quality care your parents deserve? Finding quality caregivers for in-home care, a memory care facility, or another type of long-term care facility everyone will be happy with can be very challenging. 

LTC NEWS has the country's largest database of caregivers and long-term care facilities. This database of over 80,000 providers nationwide will help you search for what you are looking for quickly and easily. 

• Long-Term Care Directory | Find Care Near You | LTC News

However, if your loved ones don't have LTC Insurance, how will you fund the cost of care? There are ways to find the resources if there is a limited amount of assets. 

For many people, their home is the source of most of their assets. A reverse mortgage could be an option to fund some in-home care to reduce the stress on the family. 

Mike Banner, the host of the TV Show "62 Who Knew" and an expert on long-term care planning, says maintaining a loved one's quality of live is essential.

I can't even imagine the stress on a family if both parents have dementia. That being said, the option of having them remain in their home, in surroundings they are familiar with, could play a huge role in maintaining their quality of life.  

Banner suggests that a reverse mortgage can pay off the existing debt on your parent's home. However, it can fund in-home care as well.

By securing a line of credit to pay for high-quality in-home care, the funds could keep them in the comfort of their own home indefinitely. 

Banner says that at least your parents can stay in their home until there is an absolute necessity for them to move to a long-term care facility. Banner will answer questions about reverse mortgages, long-term care planning, and aging - just "Ask Mike" on LTC NEWS by clicking here.

Longevity and Dementia Go Hand in Hand

As our world continues to experience an increase in longevity, the correlation between aging and the potential onset of dementia becomes increasingly apparent. It's a connection that underscores the importance of incorporating considerations for dementia and other long-term health care needs into our retirement planning.

The potential of a couple needing long-term care, for whatever reason, is becoming an increasing concern at the same time. Surveys consistently reveal a common desire among people: to minimize the burden placed on their adult children as they age. 

This sentiment is born out of a deep sense of responsibility and love for the next generation. Long-Term Care Insurance emerges as a strategic solution to address not only the financial implications but also the emotional toll that long-term care can exact on both you and your family.

The decision to secure Long-Term Care Insurance is often made before retirement, a time when many individuals find themselves in the role of caregivers for their aging parents. It prompts us to ponder our own futures and how we wish to address the potential challenges that lie ahead.

The question becomes, how will you and your family address these challenges differently, if at all? Will you chart a course that leads to a different outcome? As we navigate the intricate landscape of aging and long-term care, it's a conversation that warrants careful consideration and thoughtful planning. Ultimately, our choices today can significantly impact the quality of life we and our loved ones enjoy in the years to come.

Delaying a decision until your health changes gives you few options and increases the impact on your family and finances. Planning now keeps you in control and allows your children the time to remain family and not become caregivers or care managers.

Resources for Families Facing Alzheimer's and Dementia:

National Organizations and Support Groups:

• Alzheimer's Association: Provides a wealth of information, support groups, and educational resources for families dealing with Alzheimer's and dementia.
• National Institute on Aging (NIA): Offers comprehensive information on dementia research, caregiving advice, and financial assistance programs.
• Family Caregiver Alliance: Supports family caregivers with education, resources, and advocacy efforts.
• Alzheimer's Disease Education and Referral Center (ADERC): Connects families with research studies and clinical trials related to Alzheimer's and dementia.
• Alzheimer Society of Canada: Access to support programs, educational resources, and referral services for people with Alzheimer's disease and other dementias in Canada.
• CaringBridge: Online platform for creating personal care journals and connecting with a supportive community.
• Dementia Society of America: Provides online support groups and forums for individuals with dementia and their caregivers.

Financial Assistance:

• Medicaid: May provide long-term care coverage for individuals with dementia who meet specific low-income and assets eligibility requirements.
• Veterans Affairs (VA): Offers long-term care benefits for eligible veterans and their spouses.
• Dementia Community Investment in Canada: Government of Canada funds Community-based Dementia Programs
• Benefits for people affected by dementia in the U.K.: Advice about Income support and other benefits for those with dementia in the U.K.

Legal and Caregiving Resources:

• LTC NEWS Caregiver Directory: Search from over 80,000 long-term care providers nationwide. 
• Eldercare Locator: Provides a national helpline and online directory of local resources for older adults and caregivers.
• AARP Caregiving Resource Center: Offers information and resources on legal issues, caregiving tips, and financial planning.

Additional Resources:

• Alzheimer's Society (UK): Offers resources and support for families facing dementia in the U.K.
• Alzheimer's Australia: Provides resources and support for families in Australia facing dementia.