Navigating a Dementia Diagnosis: Six Tips for Caregivers

This is important to do early on while the person with dementia can participate in the decision, especially in large families where there can be many differing opinions. While the person with dementia may want multiple decision makers, there needs to be a single person who will have the final word. This ensures that family members will communicate and reach a consensus.

A nearly universal experience among people with dementia and their caregivers is considering a move into senior living communities. What we know from the literature is that when people are making these decisions, it can be chaotic, and they often feel like they don’t have a choice at that moment. Considering transitions from home to senior living communities before the condition progresses too far reduces pressure.

My research team created a guide for caregivers to learn about different communities and the financial considerations. It also covers navigating the emotions and guilt that arise when considering these decisions. Again, it is crucial to start these conversations early to allow time to make the best decisions later.

Seek an eldercare attorney as early as possible to avoid becoming overwhelmed with the practical financial considerations that might come into play. The attorney can help you in several ways: creating power of attorney, selecting health care agents, and setting up conservatorships. They will also be helpful with financial planning for senior living communities. Our Financial and Legal Facts & Figures guide covers these considerations in great detail.

When looking for an attorney, first gather the documents that allow you access to the patient’s financial accounts. Consider how many years of experience an attorney has and if they are a member of the National Academy of Elder Law Attorneys or the National Elder Law Foundation. These memberships and certifications are evidence of their expertise.

The Dorothy Adler Geriatric Assessment Center helps caregivers walk the path of navigating many complex conditions, including dementia. The center provides a comprehensive assessment covering fall risk; cognitive exam and depression screening; medication review; discussion of patient priorities and goals of care; and assessment for home-based care needs.

The center also offers caregiver counseling. The geriatricians and case managers view the caregiver as their patient along with the person living with dementia. They monitor caregivers for their own well-being and make referrals to all available services to alleviate caregiver burden. They also help caregivers understand the trajectory of dementia and plan changes in the patient's ability to participate in daily activities.

Caregivers at different stages can provide a roadmap for you about what you might face in the future. They can provide practical suggestions and tips for issues you may be struggling with. They may have had experience with services or facilities you are interested in. Other caregivers have lived through this and have so much wisdom to draw from.

A dementia diagnosis isn't going to change anything tomorrow, next week, or even next month. This is a long-term condition. Most people will have time to have these critical conversations and start planning. Consider who is part of your support system and begin to think about how you will be able to call on them to help you. Reflect on the activities that bring you joy, recharge your batteries, and double down on your commitment to stay engaged in those activities.