What to do When a Loved One is Diagnosed With Dementia

A study published in January in the medical journal Nature Medicine found that the risk of developing dementia any time after age 55 among Americans is 42%, greater than double the risk reported in previous studies. It also projected dementia cases to double by 2060 to 1 million new cases diagnosed each year, a direct result of the aging U.S. population.

So what should you do if a loved is diagnosed with dementia? How do you navigate such a drastic change in your life?

Preparing for Dementia Care

Leanne Lovin, community resource director at Mount Pleasant Gardens, a freestanding memory care community providing services to individuals with Alzheimer’s, dementia and any other type of memory loss, said family members often notice changes in their loved one years prior to a dementia diagnosis, and some wait until it’s almost too late to start medications to help slow the progression of the disease.

Mount Pleasant Gardens offers a robust activities program that includes cognitive, social, physical and spiritual stimulations and activities such as puzzles and games that can help dementia patients maintain cognitive function, improve memory and enhance their quality of life. “People don’t understand that your brain is a muscle, and patients with dementia need just as much care working on their brain function as they may need assistance with personal care like toileting, bathing, dressing and feeding,” Lovin explained. Keeping people with dementia active and busy can help them maintain higher functioning longer. Families that ultimately make the choice to place a loved one in a memory care facility must take steps beforehand, she advised. Mount Pleasant Gardens tries to educate families, be a support system and give them resources before such an important decision is made.

How Memory Care Communities Help

Lisa Westerman, RN, community engagement director with Alice’s Clubhouse, a dementia-specific medical-model memory care center that provides a structured day memory program Monday through Friday for adults with mild to moderate memory loss, agreed that activities are crucial. “The key element is socialization,” asserted Westerman. “The more isolated someone is, the more rapid the decline. They need to stay active.”

At Alice’s Clubhouse, individuals with dementia can have lunch and breakfast with peers, play games, exercise or engage in other group activities, maintaining that vital social aspect of their lives while offering a respite for caregivers.

Tips for Supporting a Loved One With Dementia

Westerman said when a loved one has been diagnosed with dementia, it’s imperative to equip yourself with as much education and resources as possible. Alice’s Clubhouse has abundant dementia care resources available in its lobby and it partners with community resources such as senior care advisers, home care agencies and other medical professionals in the senior industry. “The sooner you start, the better,” she emphasized.

Westerman stressed the importance of getting established with a neurologist in the early stages, which can be imperative in obtaining a treatment plan for the person’s symptoms as well as providing insight into the disease process.

Finding Caregiver Support Resources

Local caregiver support groups are available through organizations and agencies such as the Alzheimer’s Association, Respite Care Charleston, Trident Area Agency on Aging and Franke at Seaside. It is also recommended to start out with a home care provider to help your loved one get adjusted to having someone outside of the family assist them with toileting, showering and other daily routines.

Utilizing home care will also give the primary caregiver a much-needed break and help alleviate caregiver burnout. “Have you ever showered an adult? It can be exhausting and not easy,” stated Lovin.

Lovin suggested that if a spouse who does all the care initially later decides to place a loved one in a memory care center, there needs to be steps in place, such as bringing in a home care provider. This makes the transition to a memory care facility easier on the residents since they will be used to having non-family members providing personal care. Residents already are experiencing so much abrupt change – suddenly being placed in a facility with people they don’t know – that having a stranger bathe and dress them can cause extreme stress.

“Families think they are doing what’s best,” said Lovin, adding that going from a sole caregiver in a private home to putting a loved one in a community can be challenging. “So you have to help prepare your loved one to transfer successfully from home to a community.”

Westerman echoed similar sentiments, noting that a spouse needs support because caregiver burnout is a major issue. That’s where respite care programs and facilities that offer half-day care can help as well. Senior care advisers can assist with the next planning phase if a loved one eventually requires a 24-hour care facility.

“Get as much support in the early stages as you can to help you navigate through the whole process,” said Westerman.

Most importantly, Lovin encouraged being proactive and not reactive when it comes to considerations about what to do with a loved one diagnosed with dementia.

“Most families are in denial about it. They’re embarrassed or they don’t want to tell people,” Lovin said. She recommended finding a place for a loved one to go if something were to happen and asking for help. Additionally, don’t make rushed decisions about care.

Both Lovin and Westerman support fundraisers such as the annual Walk to End Alzheimer’s, which raises awareness and funding for research. “We’ve got to find a cure for this. We’ve got work on this together. And being in denial about it is not going to help anybody,” Lovin said.