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Navigating the Path: A Guide for New Dementia Caregivers

By Julie Hayes | 01/16/2024

An older adult holding hands with his caregiver.

Becoming a caregiver for a loved one with dementia is a profound and, at times, overwhelming journey. It's a role that comes with many responsibilities and challenges, and requires careful planning. If you've recently become a dementia caregiver, here's what you can expect and some recommendations to help you along the way.

Responsibilities of a Dementia Caregiver

Daily Care Tasks: Dementia caregiving often involves assisting with daily activities such as bathing, dressing, grooming, and meal preparation. For people with dementia, establishing a consistent and comfortable daily routine is important, as changes and the unfamiliar can cause stress.

Medication Management: Keeping track of medications, ensuring they are taken at the right time, and managing potential side effects is a key part of dementia caregiving. Memory loss, especially in the advanced stages of the disease, will prevent your loved one from safely doing this for themselves. 

Emotional Support: Dementia can bring about emotional challenges for both the caregiver and the individual. Offering patience, understanding and emotional support is crucial.

Safety Concerns: As dementia progresses, safety becomes a significant concern. Ensuring a secure living environment, preventing falls, and managing wandering are all part of the caregiver's responsibilities.

Challenges You May Face

Behavioral Changes: Individuals with dementia may exhibit behavioral changes such as aggression, agitation or withdrawal. Understanding these changes and finding effective ways to manage them can be challenging.

Communication Difficulties: Dementia can affect verbal and non-verbal communication. Learning effective communication strategies becomes essential for maintaining a connection.

Caregiver Burnout: The demands of caregiving, both physical and emotional, can lead to caregiver burnout. Balancing self-care with caregiving responsibilities is crucial.

Financial Strain: Dementia care can be costly. Navigating financial challenges and exploring available resources is vital.

Planning for the Journey Ahead

Legal and Financial Planning: Consider legal matters such as power of attorney and advance directives.  For a loved one with dementia, finalizing these documents before they lose the mental capacity to do so is key. As a caregiver, financial planning also involves understanding the costs of care and exploring available resources so that you can make the most informed decisions for your loved one.

Build a Support Network: Reach out to friends, family and local support groups. Though many caregivers try to take on every responsibility on their own, this can backfire and lead to caregiver burnout, which can in turn lead to conflict with your loved one. Make sure you have people in your circle that can share the journey with you so you’re not struggling on your own.

Explore Professional Support Services: Professional support services are available to help caregivers. Home healthcare agencies, adult day care programs, respite care services and care coaching services can offer assistance and relief.

Educate Yourself: Learn about dementia, its progression, and effective caregiving strategies. Knowledge is a powerful tool in navigating the challenges of dementia caregiving.

Community Resources for Support

Local Alzheimer's Associations: These organizations often provide resources, support groups, and educational programs for dementia caregivers.

Caregiver Support Groups: Connecting with other caregivers in your community through support groups can provide a sense of camaraderie and shared understanding.

Home Healthcare Agencies: Professional caregivers from home healthcare agencies can offer assistance with daily tasks, providing you with much-needed respite.

Adult Day Care Programs: These programs offer a safe and engaging environment for individuals with dementia, giving caregivers the opportunity for a break.

Respite Care Services: Respite care provides temporary relief for caregivers. It can be arranged for a few hours or a few days, allowing you time to rest and recharge.

Care Coaching Programs: Care coaching programs like WeCare…Because You Do empower caregivers to manage the demands of caregiving, meet an older loved one’s needs, prioritize self-care and navigate community resources.

This article was written as a part of the Expansion of Dementia-Capable Communities within Urban and Rural Settings in Ohio using Evidence-Based and Informed Programming project, funded by the Administration for Community Living, Alzheimer’s Disease Program’s Initiative (#90ADPI0052-01-00). Learn more here.

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