What happens if you get a dementia diagnosis? Understanding the next steps

According to the World Health Organization, dementia is a syndrome affecting millions of people, characterized by a decline in cognitive function that interferes with daily life. If you get a dementia diagnosis, it's normal to feel a range of emotions, from shock and grief to fear and relief. This guide will help you understand the next steps, including medical, legal, and emotional considerations.

Quick Summary

After a dementia diagnosis, individuals and families should focus on understanding the condition, creating a care plan, and addressing legal and financial matters. Early action and finding support can help manage symptoms and improve quality of life.

Key Points

• Start Medical Planning Early: Immediately consult with specialists like neurologists and occupational therapists to establish a treatment and management plan.

• Prioritize Legal and Financial Matters: Create a Durable Power of Attorney for finances and healthcare while the individual still has legal capacity to ensure their wishes are honored.

• Prepare for Emotional Impact: Recognize that both the person with dementia and their family will experience a range of emotions, including grief, fear, and sadness.

• Utilize Support Systems: Join support groups for both the individual with dementia and caregivers to share experiences and receive encouragement.

• Modify the Home for Safety: Implement simple changes like removing tripping hazards and installing grab bars to reduce risks and promote independence.

• Maintain Routine and Engagement: Structure daily activities to minimize confusion and anxiety. Encourage engagement in enjoyable hobbies for as long as possible.

• Take Proactive Safety Measures: Plan for future transportation alternatives and consider a medical alert system as the disease progresses.

• Educate Yourself and Others: Learn about the specific type of dementia and its progression to reduce fear and better prepare for future challenges.

A diagnosis of dementia is a pivotal moment, requiring a strategic and compassionate approach to navigating the future. While there is currently no cure for many progressive dementias, early diagnosis and proactive planning can significantly improve an individual's quality of life and that of their caregivers. The journey that follows involves a mix of medical management, legal preparations, and emotional adjustments for everyone involved.

Medical Management and Treatment

One of the first priorities after a diagnosis is to establish a comprehensive medical management plan. This plan is not only about addressing the symptoms of dementia but also about managing any other health conditions.

Working with Your Healthcare Team

Your primary care physician will likely refer you to specialists, such as a neurologist or a geriatrician, who have expertise in dementia. During appointments, it is helpful to bring a trusted family member or friend to help take notes and remember information, as it can be overwhelming to process everything at once. Your team will discuss specific treatment options, which can include both medication and non-drug therapies.

• Medications: For conditions like Alzheimer's disease, certain drugs can temporarily slow the worsening of symptoms. These often work by regulating neurotransmitters in the brain.
• Non-drug therapies: Cognitive rehabilitation with an occupational therapist can help a person with dementia develop coping strategies and learn new ways to perform daily tasks. Maintaining a consistent daily routine can also help reduce confusion and anxiety.
• Lifestyle adjustments: Regular exercise, a balanced diet, and engaging in mentally and socially stimulating activities are all recommended to help manage symptoms and maintain overall health.

Clinical Trials

Individuals diagnosed with dementia can also consider participating in clinical trials. This is an important way to contribute to research and potentially access new, experimental treatments. Resources like the Alzheimer's Association's TrialMatch can help you find suitable studies in your area.

Legal and Financial Planning

Planning for the future is crucial, as cognitive function will decline over time. Having important legal and financial documents in place while the individual can still make sound decisions is a vital step to ensure their wishes are respected and protected. An elder law attorney can provide expert guidance.

Essential Legal Documents

• Durable Power of Attorney for Finances: Designates a trusted person to manage financial affairs if the individual becomes unable to do so.
• Durable Power of Attorney for Health Care (Health Care Proxy): Appoints a person to make medical decisions if the individual loses the capacity to do so themselves.
• Living Will (Advance Directive): Details specific end-of-life medical care preferences, such as a Do Not Resuscitate (DNR) order.
• Will and Trust: Specifies how assets and property should be managed and distributed after death. A trust can help manage assets during a person's life as well.

Financial Strategy

• Organize Records: Gather and organize all important financial documents, including bank statements, insurance policies, and bills.
• Explore Benefits: Investigate potential benefits, such as Social Security Disability, Medicare, or Veterans' benefits, which can help cover costs.
• Manage Spending: Some people with dementia may use poor judgment with money. Having a system in place to monitor accounts and consolidate finances can help protect against potential exploitation.

Emotional and Social Support

Living with a dementia diagnosis affects not only the individual but also their entire support system. Addressing the emotional fallout and maintaining social connections is essential for coping and well-being.

For the Individual with Dementia

• Acknowledge Emotions: Allow yourself to feel anger, grief, or fear. It is also common to feel relief from finally having an explanation for the symptoms.
• Stay Engaged: Continue hobbies and social activities for as long as possible. Connecting with friends and family can help reduce feelings of isolation.
• Join a Support Group: Connecting with peers who are also living in the early stages of the disease can provide valuable support and a sense of belonging.
• Seek Counseling: Speaking with a therapist or counselor can help process difficult emotions and navigate the challenges ahead.

For Family and Caregivers

• Educate Yourself: Learning about the specific type of dementia and its progression can make the situation less frightening and help manage expectations.
• Seek Help: Caring for someone with dementia is demanding. Seeking support from family, friends, or a professional caregiver is not a luxury but a necessity for your own physical and emotional health.
• Utilize Community Resources: Many organizations offer free or low-cost services, including support groups, adult day programs, and workshops.
• Communicate Openly: Be honest with family and friends about the diagnosis. Sharing information and resources can help them understand the situation and provide support.

Adjusting Daily Life and Ensuring Safety

As dementia progresses, daily life will require adjustments to maintain safety and independence for as long as possible. An occupational therapist can perform a home safety evaluation.

Home Safety

• Remove Hazards: Clear away clutter, secure loose rugs, and install grab bars in bathrooms to prevent falls.
• Use Visual Cues: Use large, clear labels to help identify cabinets or rooms. Night-lights can prevent disorientation.
• Address High-Risk Activities: Tasks like driving or cooking may become unsafe. Plan for alternative transportation and modify routines to reduce risks.

Maintaining Activities of Daily Living (ADLs)

Aspect	Challenges with Dementia	Helpful Strategies
Dressing	Difficulty with sequencing tasks, such as putting clothes on in the wrong order.	Lay out clothing in the order it should be put on. Choose comfortable, simple clothing with Velcro closures.
Eating	Forgetting to eat, poor utensil use, or trouble swallowing in later stages.	Maintain a routine meal schedule. Offer finger foods or use adaptive utensils.
Hygiene	Forgetting to bathe or poor judgment regarding cleanliness.	Create a bathing routine at a calm time of day. Use simple, step-by-step instructions and ensure privacy.
Managing Finances	Poor judgment and difficulty with complex tasks, leaving them vulnerable.	Consolidate accounts, set up a Power of Attorney, and enable a trusted person to monitor statements.
Driving	Trouble with visual-spatial relationships, getting lost, or confusion while driving.	Consider a driving evaluation with an occupational therapist. Plan for alternative transportation early.

Conclusion

A dementia diagnosis is a life-altering event that requires careful planning and a strong support system. By working closely with healthcare professionals, addressing legal and financial matters early, and focusing on emotional well-being, individuals and their families can navigate the progression of the disease with greater clarity and peace of mind. It is a journey that will change over time, but proactive steps allow everyone involved to adapt and focus on preserving the best possible quality of life. Remember that resources are available, and you do not have to face this challenge alone.

Learn More

• Alzheimers.gov: Comprehensive resources and planning guides for individuals and families facing a dementia diagnosis. https://www.alzheimers.gov/life-with-dementia/planning-after-diagnosis

Frequently Asked Questions

What is the very first step after receiving a dementia diagnosis?

The very first step is to consult with a medical professional, such as a neurologist or geriatrician, to confirm the diagnosis, understand the specific type of dementia, and begin discussing treatment options.

How does a dementia diagnosis affect daily activities?

A dementia diagnosis can make it challenging to perform everyday activities like managing finances, cooking, and driving. As the disease progresses, individuals will require more assistance with tasks like dressing and hygiene.

What kind of legal documents should be prepared after a dementia diagnosis?

Essential legal documents to prepare include a Durable Power of Attorney for finances, a Durable Power of Attorney for healthcare, a living will, and a standard will.

Is it normal to feel relief after a dementia diagnosis?

Yes, it is common to feel a mix of conflicting emotions, and some people feel a sense of relief from finally understanding the cause of their symptoms. This knowledge allows them to plan for the future.

Where can I find support groups after a diagnosis?

Support groups for individuals with dementia and their caregivers are available through organizations like the Alzheimer's Association, local Area Agencies on Aging, and hospital social work departments.

How can caregivers cope with a loved one's dementia diagnosis?

Caregivers can cope by educating themselves about the disease, asking for help, joining support groups, and taking care of their own emotional and physical health. Seeking professional guidance is also recommended.

Should a person with a new dementia diagnosis stop driving?

Driving ability is affected by dementia and poses a significant safety risk. A medical professional can advise on driving safety, and it is crucial to plan for alternative transportation well in advance.