Tips for Traveling with a Loved One Who has Dementia – By Stephanie Goldstein, BSW, LBSW

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We are just past the mid-point of summer but it’s still prime travel time. A family friend’s recent experience prompted me to examine and evaluate the idea of traveling with someone who has a dementia diagnosis. They were staying in a small-town South Carolina resort (about a 14 hour car drive from New Jersey.) Unfortunately, during the vacation, the person with dementia was hospitalized with pneumonia and was admitted to the ICU (intensive care unit) of a small hospital.

The wife of the patient with dementia was left alone when her adult kids returned to their homes since she did not bring a paid caregiver on the trip. The hospital staff were not equipped to handle his needs and did not provide adequate support or an appropriate plan of care. Their disappointing experience was a harsh reminder of the challenges of traveling with someone who has dementia, what can happen, and why being prepared with a plan is imperative.

Families often plan “one last big trip” with a loved one who has Alzheimer’s disease or another type of dementia.  Here are tips to make this trip as stress-free as possible:

  • Bring copies of all legal paperwork (advance directives, POA)
  • Bring insurance cards and a list of medications
  • Learn the area ahead of time (local hospitals, pharmacies, urgent cares)
  • Place a bracelet on your loved one that identifies them, the emergency contact and diagnosis.  Enrolling your loved one in the Alzheimer’s Association’s Safe Return program (www.alz.org) is a great idea.
  • Be sure to let your loved one’s regular doctor know you are going on vacation and communicate with your provider if there is a hospitalization

As a caregiver, consider the following for yourself:

  • Carry an identification card stating you are a caregiver of someone with dementia and who to contact in the event of an emergency
  • Have the name, location and phone number of where you are staying on vacation on your person
  • If you can, bring along a companion/caregiver to assist with the travel and trip

If you implement these tips, your trip is more likely to be less stressful and fun for everyone, including your loved one with dementia. Safe travels!

 

Stephanie Goldstein, BSW, LBSW, has been in healthcare for over 15 years. Her experience includes both working directly with patients and as a manager in mental health and long term care. She is passionate about educating patients and families on options while promoting self-determination for those with complex physical, cognitive or mental health diagnoses. A frequent guest lecturer for Johns Hopkins University’s Certificate on Aging program, she also loves teaching professionals about best practices in working with older generations.

Palliative Care: Time to Provide It in All Stages of Progressive Dementia – By Guest Blogger, Mary Fridley

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The Palliative Care movement was started to support people through cancer treatments and has evolved to help anyone living with difficult medical conditions. It is a collaboration of effort among patient, family, physician, and the health care network.

The National Hospice and Palliative Care Organization defines it as, “ Patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information and choice.”

Progressive dementia is the gradual deterioration of the brain that inevitably leads to death. As Nancy Reagan said, it is “the long goodbye”.

Caregivers are all too familiar with agonizing trips to the emergency department. A loved one has a sudden change in behavior, a call is placed to the primary care physician, and the recommendation is to take the patient to the hospital emergency department.

The hospital setting is frightening and confusing to normal folk but to the dementia impaired person it is a nightmare. The caregiver tries in vain to keep the patient calm and still. A sedative may be ordered that further compromises cognition. Hours later, a urinary tract infection is diagnosed and the patient is sent home with an antibiotic prescription. If palliative care were in place, a call to the physician would allow for evaluation and appropriate treatment at home where both patient and caregiver are comfortable.

Starting palliative care early in the disease allows for the anticipation, prevention, and treatment of all aspects of “suffering” throughout the stages. It allows for patient involved decision-making, family education, and access to resources and support services. Perhaps most importantly, it provides continuous evaluation of the ever-changing needs of both patient and family while reducing cost of care.

 

Mary C. Fridley, RN, BSN, BC
Mary is a member of the Jenerations speakers bureau. She is a Registered Nurse board certified in gerontology with more than 30 years experience in the geriatric health field. She has been a consultant to families, businesses, and care facilities and has an expertise in dementia care. Mary is a successful caregiver advice columnist and former consultant to the Anne Arundel County, MD, Department of Aging and Disabilities, and a caregiver support group facilitator for 17 years. Mary speaks extensively on subjects related to dementia, eldercare, successful aging, and caregiver issues.

A Colleague Or Loved One Has Dementia: Where Do You Find Help? By Jennifer L. FitzPatrick

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While most people have heard of the Alzheimer’s Association, did you know that there are other non-profits that focus on supporting patients and families struggling with an irreversible dementia diagnosis.  Whether you are an Employee Assistance Professional or just care about someone who is showing signs of cognitive problems, here is a handy list of resources you can refer to for help:

www.alz.org offers dementia caregiver resources such as a wealth of information about Alzheimer’s disease, vascular Dementia and other irreversible dementias.  The Alzheimer’s Association offers dementia caregiver resources to professionals, patients and family caregivers, including a 24-hour helpline (800) 272-3900 that can be accessed throughout the United States.  Both caregivers of persons with dementia as well as professionals find this helpline invaluable. The Alzheimer’s Association’s national office is located in Chicago.

www.lbda.org  offers dementia caregiver resources such as educational conferences, webinars and support groups for those dealing with a diagnosis of Lewy Body Dementia.  The Lewy Body Dementia Association’s home office is based in Georgia.

www.theaftd.org Based in the Philadelphia area, The Association for Frontotemporal Degeneration offers dementia caregiver resources and information about Frontotemporal Dementia, Pick’s Disease and other Frontotemporal Degenerative conditions.  Their dementia caregiver resources include educational conferences and support groups.

www.cjdfoundation.org offers dementia caregiver resources such as educational conferences and family support to patients with Creutzfeldt-Jakob Disease  (CJD) and their families.  The Creutzfeldt-Jakob Disease Foundation’s home office is located in Ohio.

www.hdsa.org  Based out of New York, the Huntington’s Disease Society of America offers dementia caregiver resources such as support and education to patients and families impacted by Huntington’s Disease.

If you want simple, practical strategies on how to deal with the stress of caring for or supporting someone who has dementia, check out Jennifer FitzPatrick’s new book, Cruising Through Caregiving: Reducing The Stress of Caring For Your Loved One at www.cruisingthroughcaregiving.com.

 

Jennifer L. FitzPatrick – MSW, LCSW-C, CSP
The founder of Jenerations Health Education, Inc., Jennifer FitzPatrick has over 20 years’ experience in healthcare and gerontology. The author of Cruising Through Caregiving: Reducing The Stress of Caring For Your Loved One, she is also a gerontology instructor at Johns Hopkins University and an Education Consultant to the Alzheimer’s Association. She helps you reduce stress and increase productivity, morale and revenue. Jennifer and Cruising Through Caregiving have been featured in Forbes, U.S. News & World Report, The Huffington Post, Reader’s Digest, Univision and The Chicago Tribune. She has also appeared on ABC and Sirius XM.

Aggressive Behavior In Dementia: How To Prevent, How To Manage

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Most people caring for a loved one with Alzheimer’s disease or another type of dementia will encounter “aggressive” behavior from the patient at some point. This aggressive behavior can be verbal, physical or even sexual. These aggressive behaviors often occur because of hallucinations and delusions that accompany an irreversible dementia diagnosis. But there are lots of simple ways we can de-escalate such behaviors. Even better, there are many ways to prevent aggressive behavior in dementia care. Check out Jen’s presentation on preventing, de-escalating and managing aggressive behavior in dementia care:

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Whose Fault Is Violence In Dementia?

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How To Decrease Their Aggression And Your Stress Level

A big stressor while caring for someone who has dementia is when that person becomes verbally or physically aggressive. Both professional and family caregivers find this unexpected, scary and extremely stressful. But frequently when a person with dementia becomes violent it is actually our fault. While it may feel uncomfortable to cast blame on a well-intentioned professional or family member, it is likely what we are doing that can cause an aggressive or even violent response from a person with dementia.

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