After the Diagnosis: Helping Caregivers Cope With Dementia

1. Recognize that dementia affects everyone around the patient as well.

Receiving a dementia diagnosis is tough not only for the person facing the diagnosis, but also for the loved ones and care partners supporting them. What happens from this point forward will be a shared experience — at times, tougher on one than the other. Dementia care experts recognize the emotional journey following a dementia diagnosis as being very similar to the Kübler-Ross 5 Stages of Grief® model. The Alzheimer’s Association describes these stages as denial, anger, guilt, sadness and acceptance, and coordinates support groups for encouragement. While everyone’s grief process looks different, it’s important for caregivers to remember that there’s comfort in community.

2. Stay informed throughout the process.

Sometimes the scariest part of a diagnosis is fear of the unknown. Information can help combat this fear. In addition to the Alzheimer’s Association, there are many web-based resources for those living with dementia and their care partners. The National Institute on Aging has a health and safety checklist of next steps to take after leaving the physician’s office. Encourage those closest to your patient to check out these informational resources so they can learn what to expect and identify ways to support their loved one. Doing so will allow them to become a better care partner as the disease progresses. But it’s important to acknowledge that this can be a lot for an individual or a family to manage. If and when the time comes to consider long-term Alzheimer’s and dementia care, here are some factors to think through before making the move.

3. Learn to be effective care partners through communication.

With dementia often comes the loss of old communication styles. Frustration is only natural as a person’s abilities to use and receive language change. The National Institute on Aging recommends being aware of tone and volume, maintaining eye contact and encouraging a two-way dialogue. Work hard to always include the person with dementia in the conversation, especially when discussing their diagnosis, symptoms, care plan or future. Remind care partners to avoid using patronizing language such as “baby talk” or the demeaning delivery found in “elderspeak,” a simplification of speech patterns often used with older adults. Be direct, respectful and encouraging in any instructions — and, above all, remain patient and positive.

4. Strategize a daily routine.

Moments of discouragement are inevitable when living with dementia. But care partners can keep their loved one’s — and their own — spirits up, by focusing on what they can control. Developing daily routines and a positive shared approach to long-term plans can help to minimize confusion and emotional roadblocks. Implementing helpful aids and technology to assist with daily functioning — such as to-do lists, memory cards and digital calendars — is essential, as is consulting reputable resources for daily checklists and home safety tips. If there are multiple care partners, encourage them to coordinate regarding who’s in charge of transportation, meals and medications. Even with the best planning and organization, this can be a lot to manage at home. The Brookdale experts have compiled a list of tips to help when it’s time to transition to an Alzheimer’s and dementia care community.

5. Make a care plan for the care partner as well.  

In 2019, the World Health Organization (WHO) reported that friends and family spent an average of five hours of their day taking care of a loved one living with dementia. Primary care partners should regularly check in with themselves and look for signs of burnout such as irritation, exhaustion, depression and withdrawal. Friends and family should step in and encourage caregivers to take breaks. Mindfulness techniques like meditation and breathing exercises can help regulate emotions around managing it all. But most importantly, caregivers shouldn’t be afraid to ask for help.

At Brookdale, we’re here not only for our residents, but for their care partners too. Learning that a loved one has a disease such as Alzheimer’s or another form of dementia can certainly take a physical, mental and emotional toll as both the patient and their support systems adapt to a new normal. For additional resources or answers to any further questions you may have about Brookdale’s approach to Alzheimer’s and dementia care, contact a Brookdale representative today.