How to Manage Life After a Dementia Diagnosis: 3 Things You Need to Know

Receiving a dementia diagnosis is often overwhelming. For Jim Butler, the reality filled him with doubt and fear, especially during moments when he experienced lapses in cognition. “I was so worried when I got my diagnosis,” Butler, who lives with Alzheimer’s, told Being Patient. “I was frightened and unsure of myself. Every time I’d have a cognitive hiccup — and I do a couple of dozen times a day — I’d think I was getting worse. I’d worry about it. I’d get angry or frustrated about it.” 

How Do You Manage Life After a Dementia Diagnosis?

A diagnosis alters the life plans of families and their loved ones as people must pave a new path forward. According to Bree Baldwin, aging life care manager at Debra Levy Associates, creating a roadmap is critical to navigating all the challenges that come with dementia. Being Patient sat down with Baldwin to ask her how to manage life after a dementia diagnosis.

1. Establishing Care Plan Upon a Diagnosis

“An initial diagnosis is shocking. It’s frightening,” Baldwin said. “But once the news has sunk in a little bit,” it is critical to devise a care plan early on, ensuring that people’s financial and legal matters, among other affairs, are squared away while they may still have the capacity to make decisions. 

“I highly advocate for preparing a care plan as soon as possible,” she continued. “You would like to build a team that is going to be able to support you throughout this entire process. That’s true for both the person who is living with dementia, and the family or loved ones.” 

Consulting with an aging life care manager is a good way to start: A care manager will assess clients’ needs, advise families on their options, help create support networks and refer them to financial, legal and care services.

In the case that a partner of the person with dementia refuses to make a plan or seek additional support, Baldwin said it can be helpful to find a trusted individual, whether it’s a doctor, spiritual leader, another family member (perhaps not as close as an adult child) or a care manager, to help the individual understand that creating a map for the journey is critical to helping people achieve a quality of life they desire. 

2. Moving a Loved One Into Long-Term Care

Families are often faced with the difficult decision of moving a loved one into long-term care. Many questions arise as to if and when long-term care is necessary. 

“The truth of the matter is [that] most people do not want to leave their homes,” Baldwin said. “Many of our clients have been in their homes for decades and like living independently.” 

She noted that there isn’t a one-size-fits-all approach to deciding whether a loved one should move into a care community. There are many factors to weigh: For one, care managers consider whether the person with dementia and others at home are living in a protected environment. 

“Is it safe for them? Is it safe for the other people that live in the household?” Baldwin said. “And by safe, I don’t necessarily just mean where somebody is physically safe, but also, are they safe from scams and other opportunities for exploitation?” 

The mental health of a person with dementia is another critical factor. If somebody is living independently, they may be isolated from friends, family and neighbors, which can exacerbate symptoms of dementia. Alternatively, a care community may offer the support that the person needs. 

Loved ones should also consider whether the person who lives independently can drive and get necessities such as medications and groceries. Other things to think about include their level of need for assistance in dressing, walking, personal hygiene, and managing medications. 

3. Finding Care Services During COVID-19

Families should first identify reputable care agencies. That way, people can rely on a reliable service in times of need. 

“If a caregiver is unable, for whatever reason, to provide care for a certain shift,” Baldwin said, “you will always have someone that’s going to be able to fill that care role.” 

People seeking to hire a professional in-home caregiver should ask the agency the type of personal protective equipment that it’s providing for the caregiver, and whether it is training them to follow COVID-19 protocols. 

“Will the caregiver have additional education about how to care for my loved one during the pandemic?” Baldwin asked. “Also, there’s always the financial consideration: Will there be an additional cost for any of these any of the personal protective equipment? I would also recommend engaging with an aging life care manager in your area because they can point you in the right direction.” 

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