Your Loved One Was Diagnosed with Dementia — Now What?


Sarah Kaye, PT, DPT

If your loved one has been diagnosed with dementia, it’s likely that at some point, you’ve felt a little overwhelmed. Dementia can affect memory, thinking, social interactions, and more, making it hard to feel like you’re meeting all of your loved one’s health needs.

Because dementia is a progressive disorder, it’s important to proactively prepare for the future once a diagnosis has been made.

By taking some time to take a step back from the initial diagnosis and plan out the coming weeks and months, you’ll be better equipped to help your loved one live as comfortably as possible.

Take a step back

The initial diagnosis of dementia is scary, and the mind races thinking about what you need to do to help your loved one. However, it’s important to pause to allow yourself to come to terms with the diagnosis and to keep yourself from making any rash decisions.

Take some time to realize that you and your loved one aren’t alone: there are nearly 50 million people dealing with dementia worldwide.

Those people have family members who are in the same position as you. Seek guidance through other families who have experience dealing with dementia. Talk to your family members care provider and find out if there are any caregiver support groups in your area.

Connecting with others who have been through the initial diagnosis and now have care plans in place can be a great resource for you as you begin your journey as a caregiver.

Develop a Care Team  

At a basic level, a care team is the group of people that will help you care for your loved ones.

Family members, friends, and neighbors are great people to include on a care team. Because dementia can cause problems with cognition and memory, it’s best to include people familiar to your loved one.

Once you’ve identified people who will be part of the care team, it’s important to take time to assign responsibility for certain tasks, like meals or doctor’s appointments.

 Developing a care team is a key step, because you don’t want all of the responsibility falling on you.

A good care team will ensure that your loved one gets the timely, compassionate care he or she needs.

 If a care team of family and friends isn’t an option, case management and care progression through social services can assist with resources for additional support. For example, at South Shore Health, we provide home care services for a variety of patients through South Shore VNA.

Assess the home environment

For most patients with dementia, the goal is to remain at home safely in a familiar environment as long as possible. With that in mind, it’s important to take some time to look at how safe your loved one’s house will be as dementia progresses.

If your loved one’s house has a lot of disorder, it’s important to tidy up and to eliminate obvious tripping hazards, like rugs or power cords. Consider putting frequently used items in easily accessible areas, as that’s a great way to eliminate potential hazards. For more hazardous items, like stoves, putting safety locks on knobs and buttons can help prevent injury.

In-home physical and occupational therapy are always options as well. Therapists can help with home assessments and can provide guidance on how to maximize independence and safety with functional mobility and activities of daily living.

At some point, your loved one’s home may no longer be a safe option. At that time, there are many avenues to pursue, including assisted living facilities, memory care units, and long-term care placement.

Speak to an elder law attorney

Because dementia often impacts memory and cognition, plan to speak to an elder law attorney shortly after the diagnosis. It’s best to speak with an attorney sooner rather than later, as it allows your loved one to actively participate in the decision-making process.

An elder law attorney can assist with both financial and legal matters. In the case of a person with dementia, an elder law attorney can help with things like wills, power of attorney, healthcare proxies and long-term financial planning.

Talking to an elder law attorney early in the process will allow your loved one to make careful, thought-out decisions. This, in turn, will allow you as a caregiver to be sure that your loved one’s wishes are being carried out.