The Journey

If someone you care about has been diagnosed with a neurocognitive disorder, you’re probably experiencing a range of reactions, ranging from disbelief to relief.  You may feel overwhelmed, afraid, confused—even angry.  These are all normal reactions, and it will take time to process them.  You may have many questions.  The journey as care partner is not an easy one, and no one knows how it will unfold—but we do know it is a journey best traveled in the company of others.  There are many supports available to you here at Brigham and Women’s Hospital and through other organizations.

At the Center for Brain/Mind Medicine (CBMM), we believe caregivers and families are essential members of the treatment team for persons with Alzheimer’s Disease and Related Dementias (ADRD).  Together, we can help your person live better longer, and can provide tools to help you manage the challenges of this journey.

Information

When you’re ready, learning about the disease, its progression, and various treatment options can be helpful.  There’s a wealth of information for patients, carepartners, and families.  These maybe resources for use now, or in the future.

Educate Yourself

Start by asking the physician questions about the disease and discuss any concerns.  In addition to offerings on this website, here are a few other websites for additional learning:
Alzheimer’s Association – www.alz.org/manh
Alzheimer’s Foundation of America – www.alzfdn.org
The Association for Frontotemporal Degeneration – https://www.theaftd.org/
Dementia Society of America – https://www.dementiasociety.org/
Lewy Body Dementia Association – https://www.lbda.org/about-lbda/
Rare Dementia Support – https://www.raredementiasupport.org/

Build a Support System

Talk with your family and friends.  Let them know how they can assist you now and in the future.  Read about how to share the diagnosis with them by clicking here and how they might be able to help by clicking here.

Learn What is Available

Become familiar with services such as adult day programs, in-home aide services, and long-term care.  You may not need these services and resources now, by they could be essential in helping your person remain independent in the future.  Learn more about community resources by clicking here.

Plan for the Future

Make sure you or your family member has established and updated advance directives (Health Care Proxy and Living Wills) and legal documents (Durable Power of Attorney, wills, and trusts) in place.  Connect with health insurance and long-term care insurance, if in place, to learn which services are covered and which are not.  Speaking with a financial planner can also be a good idea.  Talk about long-term care and end-of-life wishes before you need them. Learn more by clicking here.

Keep Routines

Keep everyday activities as routine as possible, and use tools to support orientation to time, such as clocks and calendars, around the house.  Long-term memory is preserved until late in the illness, so if the date is prominently displayed and everyday activities are reinforced, it will be much easier for people to remember.  Learn more about the importance of routines by clicking here.

Get Moving

Exercise is good for brain and heart health, so a regular exercise routine is important.  We often recommend that people with ADRD and their caregivers exercise together.  This can as simple as taking a mid-morning walk.  Learn more about the pillars of brain health by clicking here.

Eat a Brain-Healthy Diet

Research show that a low-fat diet high in fruits, vegetables, and omega-3 fatty acids in certain fish (like mackerel or salmon) may help protect brain cells.  Many older people don’t get enough fruits and vegetables.  Eating five servings a day will protect the brain from stress, which causes wear and tear on cells.  Learn more by clicking here.

Managing Stress

Any kind of stress can aggravate symptoms such as aggression and paranoia. Encourage stress-calming techniques such as meditation or tai chi.  Learn more about reducing stress by clicking here. 

Skills

The CBMM offers a six-week program for care partners that focuses on dementia-related changes.  This group looks at strategies such as creative engagement, safety, communication skills, and behavioral management techniques.  We also promote aspects of wellness as a priority for care partners.  Learn more by clicking here.

Support

It can help to talk to trusted family members and friends, physician(s), and/or a counselor.  Here at the CBMM, we have a team of social workers who offer individual, family, and group counseling to help with adjustment to diagnosis and related impacts on daily functioning and relationships.  Staying emotionally and physically healthy is important for both the care partner and the person with ADRD.  Making connections with others can provide insight, comfort, and support.  Learn more by clicking here.