A Guide for Family Caregivers: Taking the First Steps after a Dementia Diagnosis

Receiving a diagnosis of dementia, specifically Alzheimer’s disease, for your mother can be overwhelming and unsettling. Even though she may still be able to handle certain tasks like driving, managing finances, and maintaining her home, it is important to address the situation proactively. This guide will provide you with essential steps to navigate the journey ahead as a family caregiver.

1. Organize a Family Meeting: Schedule a regular family meeting to discuss the diagnosis and its implications. Include all family members, even those living in other cities or states. This meeting is an opportunity to decide on the next steps and allocate responsibilities. Designate a spokesperson for healthcare-related matters and another person for financial affairs. Once the family agrees on the designated individuals, consider formalizing their roles through power of attorney documents. For instance, if some family members live in the same city as your mother, it makes sense to assign power of attorney for healthcare to one of them, as they can accompany her to medical appointments.
2. Assess the Abilities of the Person with Dementia: It is crucial to make an objective assessment of your mother’s abilities rather than relying solely on her self-assessment. Observe her actions firsthand to determine what she can still reasonably do for herself, while avoiding unrealistic demands. Regularly evaluate aspects such as driving, financial decision-making, staying alone, and safely using the kitchen. Remember that individuals with dementia may have a distorted perception of their capabilities, such as thinking they can still drive safely despite recent incidents of getting lost.
3. Educate Yourself about Dementia: Learn as much as possible about the disease through various channels. Read books, explore reputable websites, engage in discussions with other family caregivers facing similar challenges, and consult knowledgeable healthcare professionals. The Alzheimer’s Association (www.alz.org and 1-800-272-3900) is an excellent starting point. Additionally, “The 36 Hour Day: A Family Guide for Persons with Alzheimer’s Disease, Related Dementing Illnesses, and Memory Loss in Late Life” by Nancy Mace & Peter Rabins is a highly recommended resource.
4. Seek Appropriate Medical Care: Find a healthcare provider who understands the progression of dementia and is knowledgeable about the latest treatment options. This could be the physician who made the diagnosis or a research physician affiliated with institutions like Johns Hopkins University. Attending medical appointments alongside your mother will help you better understand the disease and its treatment. Remember, it is common for individuals, even without memory impairment, to forget important information shared during doctor visits.
5. Plan for Legal and Financial Matters: Ensure that your mother’s legal and financial affairs are in order. An essential consideration is securing good long-term care. Evaluate available assets, determine who should have access to them, and explore alternative means of financing long-term care. From a legal standpoint, review or establish documents such as a durable power of attorney, healthcare power of attorney, will, and/or trust while your mother still has the capacity to make such decisions.
6. Establish Emotional Support: Create a support system for yourself by identifying family members or friends who can provide the most support. Work together with them to find the help you need. Sometimes, all you may require is a listening ear and some relief from caregiving responsibilities. Joining a support group sponsored by the Alzheimer’s Association can be beneficial for processing your emotions and gathering valuable caregiving insights. Remember that taking care of your own well-being is crucial since burning out as a caregiver hinders your ability to support anyone, including yourself.
7. Utilize Safety Programs: At a minimum, register your mother with the Safe Return program offered by the Alzheimer’s Association. This program includes a national registry and identification bracelet, providing additional safety measures for individuals with dementia who may wander or get lost. Stay updated on advancements in technology that offer more options for locating lost or wandering loved ones.
8. Explore Local Resources: Familiarize yourself with the services available in your area to assist individuals with Alzheimer’s disease. Create a list of organizations and contacts, including adult day programs, home care agencies, and long-term care facilities. Knowing the resources available in your community will enable you to access them when needed.
9. Prioritize Caregiver Support: Take care of yourself as a caregiver. Understand that caring for someone with dementia is a marathon, not a sprint. Pace yourself and prepare for the long haul. Dementia is a disease that progresses gradually, allowing you time to recognize and address your stress triggers. Be open to accepting help and support from others. Remember, both your well-being and the well-being of the person with dementia depend on you taking care of yourself.
10. Address Difficult Situations: Difficult situations may arise within the family when dealing with Alzheimer’s disease. For instance, some family members may be in denial and unwilling to take away the person’s keys or acknowledge safety concerns. It is essential to understand that individuals in certain stages of dementia may not be capable of making rational decisions. Take action to protect both your family member and the public, if necessary. Another common situation occurs when one spouse has Alzheimer’s disease, and the other has physical health problems. In such cases, different types of care may be needed, and it may become challenging to continue living at home indefinitely. Preparing for such eventualities is beneficial.
11. Support Children and Teens: If you are an adult child caring for a parent with Alzheimer’s disease, you likely have young children or teenagers living in your home. Children often experience a range of emotions when a parent or grandparent has dementia. Younger children might fear they will develop the disease or blame themselves for causing it. Teenagers may resent having additional responsibilities or feel embarrassed by their parent or grandparent’s condition. It is crucial to identify the emotional needs of your children and find ways to address them appropriately.

Receiving a dementia diagnosis, including Alzheimer’s disease, can be distressing. However, when family members are willing to approach the illness systematically, conflicts can be minimized, and the person’s quality of life can be maximized. It is crucial to take action promptly, as the earlier you act, the more options you have available to navigate the journey ahead.

To learn more about estate planning and elder law, visit Estate and Elder Planning by David Wingate at www.davidwingate.com. For an Initial Consultation, call (301) 663-9230. We can assist you with powers of attorneys, living wills, wills, trusts, Medicaid planning, and asset protection. With office locations in Frederick, Washington, and Montgomery Counties, Maryland, we are here to provide you with peace of mind.

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