Course Book Handout “The 36-Hour Day”

“A Resource For Caregivers and Family Members With Dementia”

Presentation by: Clara M. Simon, GERT 524July 29, 2011

■ Pertinent Points of The 36-Hour Day: †What is Dementia? The Medical Explanation †The Person with a Dementing Illness. †Problems in Daily Care. †Getting Medical Help For the dementia Patient. †Behavioral Problems †How Caring for the dementia patient affects you. †Caring for the caregiver. †Nursing homes and assisted living facilities. †Future References

Course Book Handout on: “The 36-Hour Day” Authors: Nancy L. Mace and Peter Rabins

†What is Dementia? The medical explanation: It means a loss of impairment and mental decline in several areas of intellectual and social ability. Dementia describes a group of symptoms which can be caused by many different diseases. Alzheimer’s appears to be the most frequent cause of irreversible dementia in adults age 60 and over. It robs a person of intellect and memory and the ability to reason, learn, and communicate. The course of Alzheimer’s may run from 2 to 20 years, although death often occurs in about 8 to 10 years. †The Person with a Dementia Illness: The person with dementia illness has difficultyremembering things, although he/she may be skillful at concealing things. Their ability tounderstand, reason, and use good judgment may be impaired. Early memory problems aresometimes mistaken for stress, depression, or mental illness. This misdiagnosis creates an added burden for the person and their family.

†Problems in Daily Care: Acceptance that lost skills are gone and the individual cognitive ability to care and reason for themselves will continue to diminish is important. Strive to reduce confusion and tension when it arises. Often caring for a dementia patient is like caring for a child; everything regarding their livelihood must be taken into consideration (e.g. daily meals, personal hygiene, oral hygiene, bathing, dressing, medical appointments, physical security, medications, behavioral problems/moods, pureed diet, not eating/swallowing, etc.).

†Getting Medical Help For The Dementia Patient: What should you expect from your physician and other professionals? The first thing is an accurate diagnosis. Once the diagnosis has been made, you will need the ongoing help of a physician and other professionals (e.g. social worker, visiting in-home nursing staff, Alzheimer’s Association, and more) to manage the dementing illness and help you find resources you will need as a caregiver.

†Behavioral Problems Associated with Dementia: Many of the behavioral issues surrounding dementia patients can be the most distressing part of the disease. The very nature of brain impairment can make patients difficult to live with. A disruption in the brain can cause changes in emotions, personality, and the ability to reason. The mental impairment of dementia is seen gradually, causing much confusion and anxiety for the dementia patient, caregiver, and family.

“The Six R’s of Behavior Management:” ■Restrict: Trying to keep the individual from harming themselves or others. This may upset them even more. ■Reassess: Ask yourself: Might a physical illness or drug reaction be causing the problem? Might the person be having difficulty hearing or seeing? Might a different (calming) approach make a difference?

Reconsider: Ask yourself how things must seem from the patient’s point of view. The person’s anxiety is understandable when things are happening that he/she can’t make sense of. People with dementia are often unaware of their impairment. Patience is critical.

Rechannel: Look for a way that the behavior can continue in a safe and nondestructive way.The behavior may be important to the person in a manner that we cannot understand.

Reassure: When a person has become upset, fearful, or angry take time to reassure him/her that things are alright and that you still care for them. Putting your arm around the person or hugging them is a way of reassuring them. Give yourself a pat on the back for surviving one more challenge. Take a “step back” if possible to regain yourself.

Review: Afterwards, think over what transpired and how you were able to manage it. You may face this problem again and again. Try to learn from the experience. What might you try next time? Keep a journal if possible as a means of expressing your feeling. Never take your frustrations out on the patient.

†How Caring For The Dementia Patient Affects You: Caregivers are often lost inthe daily challenges of caring for the dementia patient. While your care is vital to the patient, it is also important to take care of yourself in the process. There are physical, emotional, social, financial, and spiritual stressors that affect caregivers (e.g. anger, embarrassment, helplessness, guilt, depression, isolation, worry, fatigue, illness, financial issues, etc.).

†Caring For The Caregiver: Helpful resources are available to assist you as needed. Respite Care, support groups, counseling, medical assistance, family and friends, religious support, day programs, Alzheimer’s Association, etc. all are intervention and support services available to caregiver and dementia patients. Taking time out for yourself is essential to your quality of health and life. Remember… you are as important as the patient.

†Nursing Homes and Assisted Living Facilities: As the dementia patient mental capacity, quality of life, daily caregiving challenges, and medical condition worsens, a family is unable to adequately care for their family member at home, therefore the family may need to seek assistance from a skilled long-term care facility. Understanding that suitable facilities are limited, expensive, and may not provide high-quality care, makes this search even more daunting for family members. At the severe (end) stage of dementia, an assisted livingfacility would not prove to be an option. Other choices may be considered.

†Careful and thorough consideration should be made by family membersbefore placing a family member in a skilled long-term care facility.

Factors to Consider For Evaluating a skilled long-term care facility:■ tour the facility. It should be clean, safe, and free of malignant odors.■ Inquire about the state required ratio of direct care aids per patients.■ Is the facility licensed, state certified, and have any complaints been issued against them?■ Is the facility equipped to provide professional/medical services for dementia patients? ■ Location of the facility.■ What will be the monthly cost for your family member?■ What will Medicare/Medicaid cover?■ What drugs will your family member be prescribed? Meet their Multi-disciplinary Team.■ What will the daily schedule consist of for your family member?■ What will happen in the “end-stage” of his/her disease?■ Is Hospice an option?■ Does the facility have a special nursing unit for Dementia patients?■ Thoroughly question/examine the Dementia Care Unit. Talk to other family members who presently have family members in the DCU.■ If the decision is made to place your family member in a skilled long-term care facility as much as possible, let it be a family decision.

I hope the information and resources that have been provided in thispresentation be of great assistance to you as a caregiver and to yourLove one with dementia. For further Information and enlightenment, please feelFree to make selection of “The 36-Hour Day” for your enjoyment.

A Family Guide to Caring For PersonsWith Alzheimer Disease, Related DementiaIllnesses, and Memory Loss in Later Life. ₤₤

■Become Resourceful.■Seek out other references that will giveSupport to Caregivers and Dementia Patients.