Family caregiver handbook

Go to American Red Cross and enter your zip code to find classes near your community. Another area in which caregivers need expertise is in the collection and organization of information about health care, home care, medications, safety equipment, to name a few.

These records become vital in communicating with the many providers involved in health care and home care for the elderly, but are difficult to organize without experience. Fortunately there are tools to help caregivers keep all this information organized. Respite means "time off. Respite through substitute care can be provided on a regular basis, such as three week days a week, or can be scheduled in advance when needed for vacations or special occasions.

There are two major ways that respite programs are run: 1. In-home care — provided by a companion, homemaker, personal care assistant, or home health aide who comes into your elder's home or your home.

Sometimes volunteers are available through a "Friendly Visitor Program" or local faith-based organizations. Usually this is done times a week for four hours or less to provide companionship and supervision, but no personal care or household services. In-home care allows caregivers to go out, do errands, attend to personal business, exercise.

It can be arranged through your local ASAP or from private service providers. Private services are expensive, but they are particularly important for caregivers who are employed, or live out of state. Types of Out-of-Home care: Adult Day Care Centers — for caregivers looking for one or more days of regular respite a week, provides recreational programs and meals for elders who need supervision, usually due to dementia or Alzheimer's.

Adult Day Health — provides an organized program of health care, supervision and social activities for elders with some health conditions that need to be monitored, again for caregivers looking for regular respite.

Social Day Care Groups — provide daytime supervision outside the home, usually with snacks or meals, along with recreational and social activities. Emergency Relief Respite Programs — are available to caregivers who have a personal or medical emergency - such as becoming suddenly ill, or having to attend a funeral out of town. These programs usually utilize a room in a long-term care facility or rehab center, and the elder is taken care of as if she or he were a resident in that facility.

For information on services nationwide, see the National Respite Locator Service , a free service that connects caregivers and respite programs in their own community or the community where their elderly relative resides.

Go to National Respite Locator Service. There are income eligibility requirements for this program. Contact your local ASAP for details. MA Family Caregiver Support Program administers a respite program that has age-only eligibility requirements: the elder be 60 years of age or older. Securing support from other family members, friends and community groups is essential. Caregiving is not an activity to be done alone. Joining a support group is not for everyone, but it is an option some caregivers find helpful.

In these kinds of groups caregivers can exchange information about resources, and point each other toward organizations that have been particularly helpful.

Support groups can also encourage self-care, and lend support to the idea that it is not selfish for caregivers to attend to their own needs. They can help caregivers cope with both the emotional and physical consequences of caregiving by teaching stress management methods, and providing exercise classes. Most support groups are run by trained professionals, such as social workers, and can help caregivers devise productive strategies for dealing with intra-family conflicts or tensions that may arise around difficult caregiving decisions.

There are many organizations to help you find a support group suited to your needs. Some are organized around a particular city or region, while others are focused on support by the kind of illness. There are also some health care providers in Massachusetts that provide caregiver support groups.

Call your primary care physician PCP or your health insurance provider to get referrals to groups covered under your health plan. One of the best ways to access support groups in your area is through the Massachusetts Family Caregiver Support Program.

Contact your local ASAP for more information. Sometimes the focus on meeting the needs of others results in caregivers ignoring their own physical and emotional health. This can be quite dangerous. There are tools to help caregivers assess their own health and well-being. It is reproduced here: Caregiver Self-Assessment Questionnaire. Many caregivers are employed, and combining a job and elder care offers special challenges. Employed caregivers should check with their Human Resources Department for information about employee assistance resources.

Workplace support programs can assist employees with local and long-distance caregiving in the following ways: Information and referral services. Flexible work arrangements , such as leaving early or coming in late, so that caregivers can take elders to doctor's appointments, or be with them for minor out-patient procedures. Short-term and long-term leaves , with job protection and continuation of benefits.

If an elder has a "serious health condition," employed caregivers may be entitled to 12 weeks of leave to care for an elderly spouse or parent through the Family and Medical Leave Act FMLA. The FMLA only applies to workers who work in firms of 50 or more employees and who meet certain other eligibility requirements related to length of service and hours worked per week.

Although this law does not cover all employees, it does provide leaves that are job-protected and ensure continuation of health benefits for those who are covered. There are several organizations that have detailed information on your rights under the FMLA, and can tell you if there are additional benefits under state law for family leave: Labor Project on Working Families — a national non-profit advocacy and policy organization providing technical assistance, resources and education to unions and union members on family issues in the workplace.

See Labor Project on Working Families or National Partnership for Women and Families is a non-profit, non-partisan organization that uses public education and advocacy to promote fairness in the workplace, quality health care, and policies that help women and men meet the dual demands of work and family.

Call toll free , or go to: U. For strategies to help employees and employers address the issues created by caring for elders while working, Bringing Elder Care Home offers specialized publications, including a free e-newsletter. To subscribe go on the website, Bringing Elder Care Home or call for more information The overall goal of the program is enhance the ability of family caregivers to keep elders at home in a safe and supportive environment.

Each program works to provide support in five key areas: Information about available services, community resources and local programs; Assessment of Needs and Access to Services through one-on-one assistance to identify options and gain access to community-based services; Training, support and counseling such as caregiver support groups and training classes to assist caregivers in making decisions, solving problems and managing stress; Respite Programs to provide temporary relief services through in-home care, or adult day care or emergency respite; and Supplemental services , on a limited basis, for home modifications and repair, transportation, and other things it may be difficult for the caregiver to do.

These programs primarily serve family caregivers of adults 60 years of age and older, and people of any age with a diagnosis of Alzheimer's. There are no income eligibility requirements for information or services. The program gives priority to caregivers with the greatest social and economic need, but it is also open to middle income families.

We acknowledge the limitations of this study. Our sample was primarily African American, Protestant and urban, representing a limited geographic region i. Moreover, we do not examine the longevity of Legacy treatment effects, but only examine pretest-posttest outcomes in this initial randomized, contact control group design. Additionally, although our patients were all living in the community with chronic, life-limiting illness, their proximity to death varied.

Longitudinal research is needed with intervention designs incorporating greater attention to the progression of patients' disease process and greater attention to how effective interventions can be implemented and maintained in the real world. Additionally, future studies should include measures of life expectancy or patient prognosis as inclusion criteria.

Results regarding the efficacy and acceptability of the Legacy intervention suggest that the combined treatment components of life review and engagement in pleasant events, targeting meaning-based coping, 5 may improve patients' and caregivers' communication and emotional aspects of quality of life.

Although better measures of effective coping are needed, enhancing family communication may facilitate patients' generativity, the desire to give of oneself to future generations. Future research should investigate the potential of implementing the Legacy intervention through community volunteers to increase the likelihood of real-world translation, widespread implementation, and enhanced cost effectiveness.

Portions of this paper were presented at the 58th annual scientific meeting of the Gerontological Society of America, Orlando, FL, November S Allen. Special thanks are extended to Dr. Forrest Scogin for listening to audiotapes, reading transcripts, and coding treatment delivery, to Andrew Helveston for transcribing audiotapes, to Louise Lewis and Kay Bostic for assistance in recruitment, and to all of the patients and caregivers who gave generously of their time and energy to this project.

National Center for Biotechnology Information , U. Journal of Palliative Medicine. J Palliat Med. Rebecca S. Allen , Ph. Hilgeman , M. Ege , B. Shuster, Jr. Burgio , Ph. Find articles by Rebecca S. Michelle M. Find articles by Michelle M. Margaret A. Find articles by Margaret A. John L. Find articles by John L. Louis D. Find articles by Louis D. Author information Copyright and License information Disclaimer. Corresponding author. Address reprint requests to: Rebecca S. Allen, Ph.

E-mail: ude. Copyright , Mary Ann Liebert, Inc. This article has been cited by other articles in PMC. Abstract We examined the efficacy of an innovative family-based intervention designed to decrease caregiving stress and increase family communication among individuals with chronic, life-limiting illnesses and their family caregivers in a randomized, contact control group design.

Introduction T ime is of the essence when a person is approaching the end of life amidst illness and debility. Open in a separate window. Methods Participants Participants were recruited from community and health care agencies including hospitals and dialysis centers. Table 1. Legacy intervention We define Legacy activities as projects that may: 1 assist individuals and families in initiating the process of life review and 2 result in a product that can be enjoyed by family and friends prior to and after the individual's death.

Table 2. Other ideas. Session 2 This session consisted of the interventionist coaching, reinforcing, and problem-solving the dyad's progress toward creating one tangible and lasting Legacy.

Session 3 The final intervention session consisted of sharing the dyad's Legacy project with the interventionist and evaluating the intervention procedures. Contact control group Our emotional support contact control was administered individually via telephone, and provided minimal, nonspecific support.

Measures Dyads completed the following measures at baseline and Time 1. Demographics Participants provided their age, race, gender, years of education completed, health status, and marital status at baseline. MMSE The item MMSE 25 includes several tasks that cover orientation, memory, attention, ability to name objects, follow verbal and written commands, write a sentence, and copy a complex design.

Edmonton Symptom Assessment Scale—modified ESAS Patients and caregivers independently completed this six-item visual analogue 0 to 10 scale in reference to the patient's experience with summed scores ranging from 0 to 60 and higher scores indicating worse symptoms.

Additional symptom assessments Patients and care-givers independently completed visual analogue 0 to 10 scales in reference to the patient's symptoms including weight loss, talkativeness, and agitation. Depression The item Center for Epidemiological Studies- Depression scale CES-D asks about the frequency of depressive symptoms within the past week, with a score of 16 or greater indicating clinically significant levels of depression.

Caregiver Stressors Scale—Revised Caregivers completed this item measure 36 of caregiving competency, strain, role overload, role captivity, and emotional control, with higher scores indicating greater caregiving stress. Procedure Baseline and Time 1 assessments were completed in separate, concurrent interviews with the caregiver and patient at the home of one member of the dyad.

Data analysis We conducted two group by two time of assessment mixed-model analysis of variance for each of the primary outcomes. Table 3. Feasibility and treatment implementation data A specialist in treatment outcomes and cognitive behavioral therapy with no formal ties to the Legacy Project reviewed audiotapes and transcripts from 5 of the 17 intervention dyads Patient outcomes We found no change in patients' self-report of agitation, tiredness, nausea, drowsiness, appetite, or weight loss.

Discussion These initial data suggest that our three-session Legacy intervention holds promise as a treatment for individuals with chronic, life-limiting illnesses and their palliative family care-givers. Acknowledgments Portions of this paper were presented at the 58th annual scientific meeting of the Gerontological Society of America, Orlando, FL, November References 1.

Carstensen LL. Motivation for social contact across the life span: A theory of socioemotional selectivity. In: Jacobs JE, editor. Nebraska symposium on motivation: , Developmental Perspectives on Motivation. Lincoln: University of Nebraska Press; A life-span approach to social motivation. In: Heckhausen J, editor; Dweck C, editor. New York: Cambridge University Press; Charles ST. Mather M. Aging and emotional memory: The forgettable nature of negative images for older adults.

J Exp Psychol Gen. Knight M. Goal-directed memory: The role of cognitive control in older adults' emotional memory. Psychol Aging. Folkman S. Positive psychological states and coping with severe stress.

Soc Sci Med. McPherson CJ. Wilson KG. Murray MA. Feeling like a burden to others: A systematic review focusing on the end of life. Palliat Med. Curran D. Burden to others: A common source of distress for the terminally ill.

Cogn Behav Ther. McMillan SC. Small BJ. Schonwetter R. Tittle M. Moody L. Haley WE. Affleck G. Tennen H. Construing benefits from adversity: adaptational significance and dispositional underpinnings. J Pers. Hilgeman MM. Allen RS.

DeCoster J. Burgio LD. Positive aspects of caregiving as a moderator of treatment outcome over 12 months. Kramer BJ. Gain in the caregiving experience: Where are we? What next? Zeidner M. Endler NS. Handbook of Coping. New York: John Wiley; Daily processes in coping with chronic pain: Methods, analytic strategies; pp. Serrano JP. Latorre JM. Gatz M. Montanes J. Life review therapy using autobiographical retrieval practice for older adults with depressive symptomatology.

Hopko DR. Armento M. Chambers L. Cantu M. Lejuez CW. The use of daily diaries to assess the relations among mood state, overt behavior, and reward value of activities. Behav Res Ther. Lawton MP. Rubinstein RL. Positive, negative affective states among older people in long-term care; pp. Glass TA. De Leon CF. Bassuk SS. Place a black mat or paint a black space on your front porch; this may appear to be an impassable hole to the person with dementia.

Consider installing a home security system or monitoring system designed to keep watch over someone with dementia. Some individuals will not go out without certain articles. Have your relative wear an ID bracelet and sew ID labels in their clothes. Always have a current photo available should you need to report your loved one missing.

Establish a routine for using the toilet. Try reminding the person or assisting her to the bathroom every two hours. Schedule fluid intake to ensure the confused person does not become dehydrated. Know that some drinks coffee, tea, cola, or beer have more of a diuretic effect than others. Limit fluid intake in the evening before bedtime. A commode, obtained at any medical supply store, can be left in the bedroom at night for easy access.

Incontinence pads and products can be purchased at the pharmacy or supermarket. A urologist may be able to prescribe a special product or treatment.

Use easy-to-remove clothing with elastic waistbands or velcro closures, and provide clothes that are easily washable. Maintain structure by keeping the same routines. Keep household objects and furniture in the same places. Familiar objects and photographs offer a sense of security and can suggest pleasant memories.

Try gentle touch, soothing music, reading, or walks to quell agitation. Speak in a reassuring voice. Do not try to restrain the person during a period of agitation. Allow the person to do as much for himself as possible—support his independence and ability to care for himself. Tell him you understand his frustration.

Distract the person with a snack or an activity. Allow him to forget the troubling incident. Confronting a confused person may increase anxiety. Avoid reminding them that they just asked the same question. Learn to recognize certain behaviors. An agitated state or pulling at clothing, for example, could indicate a need to use the bathroom.

Take time to explain to other family members and home-helpers that suspicious accusations are a part of the dementing illness. Try nonverbal reassurances like a gentle touch or hug. Respond to the feeling behind the accusation and then reassure the person. Increase daytime activities, particularly physical exercise. Discourage inactivity and napping during the day. Watch out for dietary culprits, such as sugar, caffeine, and some types of junk food.

Eliminate or restrict these types of foods and beverages to early in the day. Plan smaller meals throughout the day, including a light meal, such as half a sandwich, before bedtime. Plan for the afternoon and evening hours to be quiet and calm; however, structured, quiet activity is important. Perhaps take a stroll outdoors, play a simple card game, or listen to soothing music together.

Turning on lights well before sunset and closing the curtains at dusk will minimize shadows and may help diminish confusion. As a last resort, consider talking to the doctor about medication to help the agitated person relax and sleep. Be aware that sleeping pills and tranquilizers may solve one problem and create another, such as sleeping at night but being more confused the next day. Catnaps during the day also might help.

Make meal and snack times part of the daily routine and schedule them around the same time every day. Instead of three big meals, try five or six smaller ones.

Make mealtimes a special time. Try flowers or soft music. Turn off loud radio programs and the TV. Finger foods support independence. Pre-cut and season the food. Provide assistance only when necessary and allow plenty of time for meals. Sit down and eat with your loved one.

Often they will mimic your actions, and it makes the meal more pleasant to share it with someone. Prepare foods with your loved one in mind. If they have dentures or trouble chewing or swallowing, use soft foods or cut food into bite-size pieces. If loss of weight is a problem, offer nutritious high-calorie snacks between meals.

Breakfast foods high in carbohydrates are often preferred. On the other hand, if the problem is weight gain, keep high-calorie foods out of sight. Instead, keep handy fresh fruits, veggie trays, and other healthy low-calorie snacks.

Mornings or nights? Did she have her hair washed at the salon or do it herself? Was there a favorite scent, lotion, or powder she always used? Adopting—as much as possible—her past bathing routine may provide some comfort. Remember that it may not be necessary to bathe every day—sometimes twice a week is sufficient.

If your loved one has always been modest, enhance that feeling by making sure doors and curtains are closed. Whether in the shower or the bath, keep a towel over her front, lifting to wash as needed. Have towels and a robe or her clothes ready when she gets out. Be mindful of the environment, such as the temperature of the room and water older adults are more sensitive to heat and cold and the adequacy of lighting. A hand-held shower might also be a good feature to install.

Remember—people are often afraid of falling. Help them feel secure in the shower or tub.