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Most people will become caregivers-or need one- at some point in their lives. A caregiver is anyone who provides basic assistance and care for someone who is frail, disabled or ill and needs help. Caregivers perform a wide variety of tasks to assist someone else in his or her daily life, for example, balancing a checkbook, grocery shopping, assisting with doc-tor's appointments, giving medications, or helping someone to eat, take a bath or dress. Many family members and friends do not consider such assistance and care “caregiving”-they are just doing what comes naturally to them: taking care of someone they love. But that care may be required for months or years, and may take an emotional, physical and financial toll on caregiving families.
For some people, caregiving occurs gradually over time. For others, it can happen overnight. Caregivers may be full- or part-time; live with their loved one, or provide care from a distance. For the most part, friends, neighbors, and most of all, families, provide-without pay-the vast majority of care.
Many American families care for an adult with a cognitive (brain) impairment. Cognitively-impaired people have difficulty with one or more of the basic functions of their brain, such as perception, memory, concentration and reasoning skills. Common causes of cognitive impairment include Alzheimer's disease and related dementias, stroke, Parkinson's disease, brain injury, brain tumor or HIV-associated demen-tia. Although each disorder has its own unique features, family members and caregivers often share common problems, situations and strategies.
We know that cognitive and memory impairments can change how a person thinks, acts and/or feels. These changes often present special challenges for families and caregivers. An ordinary conversation, for example, can be quite frustrating when your loved one has difficulty remembering from one moment to the next what has been said.
Individuals with moderate to severe dementia or another cognitive impairment often require special care, including supervision (sometimes 24 hours a day), specialized communication techniques and management of difficult behavior. They may need help with activities of daily living (called “ADLs”), such as bathing, eating, transferring from bed to a chair or wheelchair, toileting and/or other personal care.
Individuals with cognitive impairment may experience a range of behavioral problems that can be frustrating for caregivers. These might in-clude communication difficulties, perseveration (fixation on/repetition of an idea or activity), aggres-sive or impulsive behaviors, paranoia, lack of moti-vation, memory problems, incontinence, poor judg-ment and wandering. Some people may develop be-havioral problems early on, while others go their entire illness with only minor issues. Most cogni-tively-impaired persons fall somewhere in the mid-dle, having good days and bad days (or even good or bad moments). Anticipating that there will be ups and downs, and maintaining patience, compassion and a sense of humor will help you cope more effectively with difficult behavior. It's important to remember that it's the disease, not the person, causing the behavior.
Helpful suggestions for managing these problems include communication techniques, such as keeping language simple and asking one question at a time. Break down tasks and questions. For example, instead of asking, “would you like to come in and sit down and have a snack?,” use simple statements such as, “sit down here,” and “here's a snack for you.”
Wandering and poor judgment may signal the need for 24-hour supervision. Be sure to review the home safety checklist on page 4 and know whom to contact in your community in case of an emergency. If wandering or aggressive behaviors are problems, you may need to contact emergency, police, fire or medical systems. (For additional in-formation, see FCA Fact Sheets Caregiver's Guide to Understanding Dementia Behaviors, and Dementia, Caregiving and Controlling Frustration.)
Whether you have moved into the role of caregiver gradually or suddenly, you may feel alone, unprepared and overwhelmed by what is expected of you. These feelings, as well as other emotions-fear, sadness, anxiety, guilt, frustration and even anger-are normal, and may come and go throughout your time of providing care. Although it may not seem possible, along with challenges will come the unanticipated gifts of caregiving-forgiveness, compassion, courage-that can weave hardship into hope and healing.
Each caregiving family faces unique circumstances, but some general strategies can help you navigate the path ahead. As a traveler in new terrain, it is wise to educate yourself as best you can about the landscape and develop a plan accordingly, with the flexibility to accommodate changes along the way. Below are ten steps to help you set your course.
Step 1. Lay the foundation. Establishing a baseline of information lays the groundwork for makingcurrent and future care decisions. Talk with your loved one, family and friends: What was mom “nor-mally” like? How has she changed? How long has she been forgetting to take her medicine? When did she stop paying her bills? Answers to questions such as these help create a picture of what is going on and for how long. This basic information not only gives you a realistic view of the situation, but also provides an important foundation for professionals who may be called in to make a more formal assessment.
Step 2. Get a medical assessment and diagnosis. It's very important for your loved one to get a com-prehensive medical exam from a qualified health care team that reviews both physical and mental health. Many medical conditions can cause dementia-like symptoms, such as depression and medication interactions. Often these conditions can be reversed if they are caught early enough. Additionally, new drug treatments for diseases such as Alzheimer's and Park-inson's diseases may be most effective in the early stages of the disease. A confirmed diagnosis is essen-tial in accurately determining treatment options, iden-tifying risks and planning for the future. Take your loved one to a memory disorder clinic, if one exists in your community, to get an accurate diagnosis.
From the Family Caregiver Alliance. Reprinted with permission. All rights reserved. Third-party usage restricted. www.caregiver.org. 800-445-8106.