Caregiver Guidance
The Silence of a Morning: Beginning with a Story
Mrs. Ayşe’s husband, Mr. Hasan, was standing in front of the mirror one morning, struggling to recall his own name. As crossword puzzles once solved together, shared tea times, and memories gradually faded, Mrs. Ayşe started to feel the weight of a lifetime—not just her husband’s smile—on her shoulders. For Ayşe and Hasan, dementia wasn’t just forgetfulness; it marked the beginning of a new era filled with uncertainty, emotional fatigue, and increasing expenses.
Dementia: Definition and Social Significance
Dementia is a brain disease characterized by progressive loss of cognitive functions, especially memory, as well as thinking, language, reasoning, and social skills. Its most common form is Alzheimer’s disease, and according to the World Health Organization, around 55 million people are living with dementia worldwide. More than 10 million new cases are diagnosed each year.
This disease impacts not only individuals but also families and healthcare systems deeply. A forgotten name, a mixed-up date, a lost address; over time, these lead to loss of independence and increased dependence on others. Yet most caregivers are caught off guard when faced with the financial burden. Early planning becomes life-saving at this point.
The Financial Burden of Dementia: Warm Lives Hidden in Cold Statistics
The economic burden of dementia consists of both direct healthcare costs and indirect expenses. Direct costs include easily calculated items such as hospital visits, medications, and caregiver wages. Indirect costs, meanwhile, encompass loss of workforce, family members leaving jobs, and home modifications—often unexpected and spread over time.
In the USA, the annual total cost of Alzheimer’s and other dementias in 2023 was calculated as $345 billion.
In Turkey, the annual care cost for an advanced dementia patient requiring regular care starts from at least 100,000 TL.
54% of caregivers experience income loss, and 31% of them have had to quit their full-time jobs.1
The global burden of dementia is around 1 trillion USD each year, and it is expected to reach 2 trillion dollars by 2030 (WHO).
All these numbers, in reality, mean a child dropping out of school, a mother giving up her dreams, or a father’s disappearance before your eyes.
Core Components of the Financial Burden
To better understand the costs dementia brings, we can examine this burden under a few main headings:
Healthcare Services and Medication Costs: Regular doctor check-ups, prescribed medications, and neurology/psychiatric assessments are recurring financial items for dementia patients.
Professional Care and Home Support Services: In advanced stages, supervision and assistance are required for much of the day. The cost of hiring a caregiver or a care facility can exceed most budgets.
Indirect Costs of Home Care: Caregivers leaving work, reduced workforce, sometimes home adaptations for safety (door alarms, bathroom handles, etc.), and expenses for dementia-related technologies.
Social, Psychological Support and Ancillary Services: Costs for consultancy, psychological support, social activities, or rehabilitation can be significant though sometimes overlooked.
In Turkey, with the rapidly aging population, the pressure on families grows heavier each year. Only 8% of patients benefit from state-supported care services.2 This indicates that the burden largely rests on families’ shoulders.
What is Early Planning? Why Is It So Vital?
Dementia typically follows a progressive and often irreversible course. Even in the early stages, forgetfulness, skill loss, and behavioral changes can be observed. Yet, the gravest losses usually occur not in the late stage but when we are caught unprepared.
Early Planning means reviewing all financial, legal, and social processes from the time of diagnosis.
Evaluating economic savings, researching insurance options, and seeking financial and legal counsel are each part of this process.
This way, instead of being caught off guard, you become prepared and resilient.
Which Processes Does It Cover?
Budget Planning: Listing and forecasting current and forward-looking expenses in advance.
Insurance and Support Research: Timely inquiry into private health insurance, care insurance, government support, or aid provided by civic organizations.
Legal Processes: Settling legal matters such as wills, power of attorney, and asset management.
Social Resources: Investigating what level of support can be obtained from municipalities, associations, patient groups, or neighborhood aid.
“Being caught unprepared leaves you vulnerable to dementia both emotionally and financially. Early planning improves your loved one’s quality of life and brings you peace of mind.”
The Scientific Basis for Early Planning
Multiple international guidelines and studies have shown that financial planning carried out early in the course of dementia contributes greatly to care quality and the psychosocial well-being of both patients and their caregivers, especially in developed countries.
According to the Alzheimer's Association’s report, families who prepare financially from diagnosis experience smoother transitions in care (from home to institution, to care hospitals, etc.), and depression and burnout rates among caregivers are 40% lower. (Source)
In Turkey, much of dementia care is provided by family members. In these cases, the anxiety, guilt, and burnout caused by financial uncertainty is much higher. Early financial planning functions as a key for maintaining balance in the lives of family members.
Points to Consider When Making Financial Plans
Complete and Clear Information: All family members should realistically understand the course of the disease and potential costs.
Expense Items List: Consult with doctors and social workers to anticipate what types of spending may be needed in which areas.
Management of Income and Assets: Current savings, insurance options, properties, retirement pensions, and third-party/organizational support should all be considered.
Legal Documents: Always seek support from a notary or legal professional on power of attorney, authorization for financial matters, and inheritance planning.
Tracking and Updating the Process: Expense items may change as the disease progresses. Plans should be reviewed periodically.
Practical Strategies for Dementia Caregivers
Take a Deep Breath at Diagnosis: Instead of thinking everything will fall apart, remember you are just at the start of a long, step-by-step journey.
Seek Counseling: Financial advisors, social workers, or employees of NGOs (such as the Turkish Alzheimer Association) can provide important information.
Utilize Social Insurance, Private Insurance, and Public Support: Make use of opportunities provided by local authorities and social assistance funds.
Don’t Blame Yourself: Realize that the disease and consequent expenses are beyond your control. Don’t neglect your own health on the care journey.
Communicate Openly with Family: Stepping out of your comfort zone may be difficult, but discussing possible expenses, the full burden of the disease, and possible alternatives openly in the family minimizes financial surprises.
Coping with Financial Burden: The Power of a Human Perspective
Numbers and tables are often cold. But there are real lives behind them. The power of early planning reminds people they are not alone and that much can be done. Sometimes it’s a bank transaction or a care facility payment schedule, or sometimes it’s your child’s embrace saying, "Dad may no longer recognize you, but you are still his closest person."—these keep you going.
Financial planning is much more than money management. It reduces the psychological burden for both the patient and the caregiver and prepares the ground to cope with negative emotions more effectively. Studies show that care quality improves by up to 25% in families who are financially better prepared.3
Current Support and Opportunities in Turkey
Although financial support for dementia patients is limited in Turkey, it is possible to benefit from various public programs and social assistance:
Ministry of Family and Social Services: You can find information here about disability pensions, home care payments, and supports provided with disability reports.
Municipal Support: Especially in metropolitan areas, home care, cleaning, and transportation support are available.
Pension and Elderly Care Guides: In addition to pensions, you can benefit from care guides provided by various NGOs.
Civil Society Organizations: Organizations such as the Turkish Alzheimer Association and the Turkish Neurology Association offer both financial and cognitive/psychological support.
Looking to the Future with Confidence: A Last Word and Emotional Connection
It’s hard to describe how it feels when a loved one who has walked by your side all your life asks, "What was your name again?" But you should know that you are not alone on this difficult journey—there are social supports, financial plans, and educational resources to accompany you.
Let forgetfulness not be your destiny; expand the bounds of love and effort with early planning. Planning your finances and legal affairs today enables you to face both losses and your new life with confidence.
The key to staying strong for your loved ones and having a peaceful journey lies in early planning. Do not forget, prepare, and hope...
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