The Center for Brain/Mind Medicine

Caring for a Person With Neurologic Disease

No one is born knowing how to be an effective caregiver for someone with a neurologic condition such as Alzheimer’s Disease and Related Dementias (ADRD).  Training and support are crucial, yet 93% of family members caring for another adult say they were never taught how to do this difficult work.

At the CBMM, we view caregivers as vital members of the medical team.  Our goal is to provide education, support, and connection to empower caregivers.

Newly Diagnosed—Now What?

If someone you care about has recently been diagnosed with ADRD, you’re probably experiencing a range of reactions, from disbelief to relief.  You may feel overwhelmed, afraid, confused—even angry.  These reactions are all normal, and it will take time to process them.  You undoubtedly have questions.  The journey as caregiver is not easy, and we cannot know how it will unfold, but we do know it is a journey best traveled in the company of others.  There is a great deal of support available to you here at the CBMM and through other organizations.

Early Detection Changes How Someone Lives With Dementia

Until recently, being diagnosed with ADRD evoked images of late stages, when a person has little memory and is fully dependent on others.  However, research advances have made it possible to detect ADRD much earlier, changing what it means to live with these diseases.  Early detection and intervention can change the course of these illnesses, and training, education, and support significantly improve health outcomes for both caregivers and persons with ADRD.

Planning For Your Future Selves

Learn about important aspects of future care planning, including important documents, types of care, residential living options, and how to pay for care. This workshop is for patients, and their families and care partners served in the BWH Outpatient Neurology clinic who are living with a neurodegenerative disorder.

Companion handouts with active resource links for online viewing and note taking can be found here.

Supporting the Primary Caregiver

Do you know someone who has dementia and/or is the primary caregiver of someone with dementia?  Are you wondering how you can help?  Living well with dementia and certainly caring for someone with dementia are best done with the company and help of others.  There are many ways you can support and enrich the lives of people living with dementia and those who care for them.

Caregiver Training & Education

When you feel ready, learning about the disease, its progression, and various treatment options can be helpful.  We’ve gathered a wealth of information for caregivers, patients, and families, including resources you may need now or in the future.

Stages & Symptoms

In addition to memory loss, dementia affects a person’s ability to function in many ways.  Learn about the different stages and symptoms of ADRD and how caregiver responsibilities, relationships, and the grieving process may unfold.

Sharing the Diagnosis

It’s natural to feel uncomfortable about sharing a diagnosis like ADRD.  You want to protect your person from stigma and shame.  Saying it out loud can be painful and overwhelming.  But the alternative—making this journey alone—carries significant physical and emotional risks for both caregivers and persons with ADRD.  Learn how to tell people about your person with ADRD and, more importantly, how to gain their help and support.

Behavioral Changes

Seeing behavior and personality changes in a person with ADRD is challenging enough, but at times, behaviors can become difficult to manage, even frightening.  Learn about common behaviors in ADRD, different approaches to manage them, and resources for support.

Communication Changes

The ability to communicate changes over the course of ADRD, putting additional strain on the caregiver and patient.  Learn about common communication changes and how to support your person’s ability to express their needs and stay socially engaged.

Routines & Daily Care Plans

Routines and daily care plans provide a sense of control and safety for persons with ADRD.  Learn how to structure routines, create written and visual schedules to manage basic care needs, and build in stimulating activities to increase engagement.

Safety

Safety-related issues can arise at any stage of ADRD.  Ongoing safety evaluations must be a priority to prevent physical and emotional injuries.

Patience

Your person is changing as a result of the disease process.  You’ve likely taken on additional responsibilities.  Daily uncertainty and unpredictability are hard, and you may find yourself struggling with patience.

Caregiver Wellness

Caregivers are at increased risk for developing serious health problems as a result of the stress and physical strains of caregiving.  Caregiver wellness means different things to different people, but learning how to ask for and receive help from others is crucial in keeping caregivers healthy.

Grief & Loss

Grieving the gradual loss of someone while they are still present and need care is heartbreaking and confusing.  Learn about the unique grief experience known as “ambiguous loss.”

End of Life

Thinking about the end of life can be difficult.  Making medical decisions, preparing for your person’s passing, and anticipating a time when you’re no longer a caregiver are important considerations at this stage.