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:

Read More “Aggressive Behavior In Dementia: How To Prevent, How To Manage”

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.

Read More “Whose Fault Is Violence In Dementia?”

What About Me? Getting Your Needs Met When Someone You Care About Has Dementia

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“You’ve got to join their world.” That’s the advice that professionals like me tell caregivers about their loved ones who have Alzheimer’s disease or another type of dementia. Persons with dementia are continuously losing the ability to communicate and remember. Their behavior is often odd or even embarrassing. Their personality changes.

Best practices for joining “their world”– Don’t correct them. Don’t argue. Go with the flow.

And you finally have adapted. You now get it. You’ve stopped arguing with your Dad when he thinks it’s snowing on a beautiful Autumn day. You no longer expect your husband to remember to lock the door. You accept that your best friend of 40 years now thinks you are her mother.

But by graciously adapting to the world of a person with dementia, you are also likely missing aspects of the old relationship you had with that person.

What if your Mom was your primary confidante? What if your husband was the person who always made you feel safe? What if you and your best friend used to laugh for hours over inside jokes?

As important as it is to join the world of a person who has dementia, it’s also critical to acknowledge the losses. While nobody can or should replace your friend or family member, think about how you can get some of those neglected needs met. Who can you confide in now? Who will help you feel safe? Who can you laugh with?

For more tips on getting your needs met when you are caring for someone with dementia, check out my new book, Cruising Through Caregiving: Reducing The Stress of Caring For Your Loved One. To download a free chapter check out www.cruisingthroughcaregiving.com.