Family Influences



Family Influences


Elizabeth C. Mueth, MLS, AHIP



Learning Objectives


On completion of this chapter, the reader will be able to:


1. Gain an understanding of the role of families in the lives of older adults.


2. Identify demographic and social trends that affect families of older adults.


3. Understand common dilemmas and decisions older adults and their families face.


4. Develop approaches that can be suggested to families faced with specific aging-related concerns.


5. Identify common stresses that family caregivers experience.


6. Identify interventions to support families.


7. Plan strategies for working more effectively one-on-one with families of older adult clients.


What would you do if you were faced with the following situations?


• You have been married 45 years. Your husband recently had a severe stroke and cannot communicate. He managed the family finances and made the family decisions. You do not know anything about your financial affairs.


• Your parents, in their upper 70s, are mentally competent, but their physical condition means they cannot manage alone in their home. They require all kinds of help and reject any other living situation or paying outsiders for services.


• Your father is dying. You promised that no heroic measures would be taken to prolong his life; he did not want to die “with tubes hooked up to my body.” Your brother demands the physician use all possible measures to keep your father alive.


• Your father’s reactions and eyesight are poor. You don’t want your children with him when he is driving. He always takes the grandchildren to get ice cream and will be hurt if you say the children cannot ride with him.


Although each situation involves medical considerations, these are tough issues and decisions that extend beyond medical aspects (Schmall, 1994):


• How much independence do I allow my family member to have and how much risk do I allow him or her to take?


• Is my family member fully capable of making his or her own decisions?


• When, if ever, should I step in and take control of the situation?


• What should I do if my family member refuses help or refuses to make a change?


• What should I do if my family member’s actions are putting himself or others at risk?


The nurse needs to be aware of the various roles families play in the lives of older adults, to be sensitive to family needs as well as to those of the older person, and to recognize and accept that some families are limited in the level of support and caregiving they can provide.




Role and Function of Families


Families play a significant role in the lives of most older persons. When family is not involved, it generally is because the older person has no living relatives nearby or there have been long-standing relationship problems. Nearly 30% of all adults 75 years or older require help with one or more activities of daily living (Sands, 2006). About 7.4% of Americans 75 or older lived in nursing homes in 2006 compared with 8.1% in 2000 and 10.2% in 1990. More than 1.8 million people live in nursing homes (El Nasser, 2007). This means that the majority of care for the elderly is provided in the home environment. Community services generally are used only after a family’s resources have been depleted. However, several demographic and social trends have affected families’ abilities to provide support. These trends include:



• Increase in the old-old. By the year 2050, the number of Americans age 65 or older is expected to more than double, while those age 85 or older, who are most likely to use long-term care services, will account for 5% of the population, or triple the size of today’s demographic. The oldest baby boomers are fast approaching retirement age, and we will be ushering in a generation of seniors larger than any previously served by the nation’s health care system. Average life expectancy has increased dramatically over the past century, from 50 years in 1900 to 75+ today. In 1900, 75% of the population died before age 65; in 1995, 70% died after 65. The number of individuals who are 85 or older will increase from 2.3 million in 1995 to 16 million in 2050 (Willging, 2003, Willging, 2006).


• Decrease in fertility. A declining birth rate (Hamilton, Martin, & Ventura, 2009) means fewer adult children are available to share in the support of aging parents.


• Increase in employment of women. Traditionally women have been the primary caregivers. However, in 2008, women comprised 46.5% of the workforce and are projected to comprise 47% by 2016. Approximately 75% of women work full-time, and 25% work part-time. Although employed women often provide as much support as their unemployed counterparts, they often sacrifice personal time. Women aged 55 to 67 reduced their at-work hours by an average of 367 hours, or 41%, to provide some level of care to their parents. A fairly small percentage (14%) leave the workforce or take an early retirement to provide care (Quick Stats on Women Workers, 2008), but many rearrange work schedules, reduce work hours, or take a leave of absence without pay. Changes in employment status have implications for the financial security of these women in their own later years.


• Increase in mobility of families. Families today may live not only in a different city from their older relative but also in a different state, region, or country. In fact, according to 2003 U.S. Census Bureau data, 14% of the U.S. population has migrated since the last census. Geographic distance makes it more difficult to directly provide the ongoing assistance an older family member may need.


• Increase in divorce and remarriage. Since the 1950s divorce rates have risen among all age groups. The current divorce rate in the United States for first marriages is 41%, for second marriages, 60%, and for third marriages, 73% (Divorce Rate in America, 2009). Divorce and remarriage can increase the complexity of family relationships and decision making and can affect helping patterns. Difficulties can arise from family conflicts, the different perspectives of birth children and stepchildren, and the logistics of caring for two persons who do not live together. However, in some situations, remarriage increases the pool of family members available to provide care.


• Elderly providing as well as receiving support. Many elderly receive financial help from adult children, but many older adults give support (money, child care, shelter) to their adult children and grandchildren.


• Increased variety in “supportive services” for the elderly. According to the National Investment Conference (NIC), a nonprofit education forum based in Annapolis, Maryland, the senior-housing market is expected to more than triple, growing from an estimated $126 billion in 2005 to $490 billion by 2030, and the largest area of growth will be in the assisted living sector. The number of providers of assisted living services has increased by 49.4%, and the number of beds available for assisted living has increased by 114.8%. (The trend is expected to continue: a 150% increase in the number of assisted living units may be seen by 2030.) In contrast, the number of skilled nursing providers has grown by only 22.2%, and the number of beds increased by only 10.4% (Raymond, 2000).


For more on the family views of various cultures regarding older adults, see the Cultural Awareness Box on p. 96.



Common Late-Life Family Issues and Decisions


When changes occur in an older person’s functioning, family members are often involved in making decisions about the person’s living situation, arranging for social services and health care, and caregiving. They also can facilitate, obstruct, or prohibit the older family member’s access to care and services.


Some of the most common issues and difficult decisions families face include changes in living arrangements, nursing facility placement, financial and legal concerns, end-of-life health care decisions, vehicle driving issues, and family caregiving.



Changes in Living Arrangements


Many families face the question, “What should we do?” when an older family member begins to have problems living alone. Common scenarios heard from families include the following (Schmall, 1994):



Family members are often emotionally torn between allowing a person to be as independent as possible and creating a more secure environment. They may wonder whether they should force a change, particularly if they believe the person’s choice is not in his or her best interest. The family may be focused on the advantages of a group living situation (e.g., good nutrition, socialization, and security). However, an older person may view a move as a loss of independence or as being “one step closer to the grave.”


The nurse plays an important role in



• Providing an objective assessment of an older person’s functional ability



image CULTURAL AWARENESS


Cultural Attitudes Toward Older Adults



































Blacks
Whites Less respect for older adults and their role in the family
  Tendency for men and women to share more equally in family; democratic family structure
  Aging parents expected to be self-sufficient and not overly dependent on adult children
East Asians
  Oldest son assuming responsibility for aging parents as part of filial duty
Hispanics More overt respect for older adults than whites
  Tendency toward a more patriarchal family structure
  Aging parents invited to live in household that consists of extended family members
Native Americans (540 federally recognized tribes) High level of respect for older adults and their years of accumulated wisdom and knowledge; sought after for advice


image




Myths and the Reality of Aging


































Myth In the past, three-generation households were the most common living arrangement.
Reality Coresidence of three generations has never been the dominant living arrangement in the United States. Most households consisted of nuclear, not extended, families.
Myth Most older persons want to live with their children.
Reality Most older persons, as long as they can manage independently, prefer to live in households separate from their children. “Intimacy at a distance” is preferred both by older persons and their adult children.
Myth Older persons are often abandoned by their families.
Reality The family is still the top provider of support and caregiving to older persons. Even when bedridden or home-bound, older persons are twice as likely to be cared for by a relative at home than by professionals in an institution. Extended family members, for example, nieces, nephews, or grandchildren, often help when older persons do not have spouses or adult children. Also, brothers and sisters often play an important role in the lives of older persons who are widowed or who have never married.
Myth Families use nursing facilities as a “dumping ground” for frail older family members.
Reality Most persons in care facilities are greatly impaired and need comprehensive care. Older persons who do not have children and live alone are the most vulnerable to nursing facility placement. Approximately half of all nursing facility residents are single women or widows without close family. Families do not suddenly “dump” and abandon their older family members in care facilities. The reality is that most families use nursing facilities as a last resort, only after they have exhausted other alternatives.
Myth If family-oriented services are made readily available, families will be less likely to provide caregiving.
Reality Policymakers sometimes fear that requests for services will be overwhelming if respite and adult day care programs are subsidized; yet studies show that caregivers, in general, are willing to pay for what they can afford and are modest in their use of services.


• Exploring with families ways to maintain an older relative in his or her home and the advantages and disadvantages of other living arrangement options


• Helping families understand the older person’s perspective of the meaning of home and the significance of accepting help or moving to a new environment


It can be particularly frustrating when a family knows an older relative has difficulty functioning independently yet refuses to accept help in the home. However, as long as the older person has the mental capacity to make decisions, he or she cannot be forced to accept help. To deal successfully with resistance, a family first must understand the reasons underlying the resistance. Encourage the family to ask themselves these questions:



Depending on the answers to these questions, it may be helpful to share one or more of the following suggestions with the family (Schmall, Cleland, & Sturdevant, 1999):



• Deal with your relative’s perceptions and feelings. For example, if your older mother thinks she does not have any problems, be objective and specific in describing your observations. Indicate that you know it must be hard to experience change. If your father views government-supported services as “welfare,” emphasize that he has paid for the service through taxes.


• Approach your family member in a way that prevents him or her from feeling helpless. Many people, regardless of age, find it difficult to ask for or accept help. Try to present the need for assistance in a positive way, emphasizing how it will enable the person to live more independently. Generally, emphasizing the ways in which a person is dependent only increases resistance.


• Suggest only one change or service at a time. If possible, begin with a small change. Most people need time to think about and accept changes. Introducing ideas slowly rather than pushing for immediate action increases the chances of acceptance.


• Suggest a trial period. Some people are more willing to try a service when they initially see it as a short-term arrangement rather than a long-term commitment. Some families have found that giving a service as a gift works.


• Focus on your needs. If an older person persists in asserting, “I’m okay. I don’t need help,” it can be helpful to focus on the family’s needs rather than the older person’s needs. For example, saying, “I would feel better if…” or “I care about you and I worry about…, or will you consider trying this for me so I will worry less?” sometimes makes it easier for a person to try a service.


• Consider who has “listening leverage.” Sometimes an older person’s willingness to listen to a concern, consider a service, or think about moving from his or her home is strongly influenced by who initiates the discussion. For example, an adult child may not be the best person to raise a particular issue with an older parent. An older person may “hear” the information better when it is shared by a certain family member, a close friend, or a doctor (Box 6–1).



BOX 6–1   JOHN A. HARTFORD FOUNDATION INSTITUTE FOR GERIATRIC NURSING AT NEW YORK UNIVERSITY


Mission


The John A. Hartford Foundation Institute for Geriatric Nursing (www.hartfordign.com) is the only nurse-led organization in the country seeking to shape the quality of the nation’s health care for older Americans by promoting geriatric nursing excellence to the nursing profession and to the larger health care community. The Hartford Institute seeks to positively influence both the skills of individual nurses and the quality of the systems in which they learn and work. The website contains resources and links to all the products and resources developed by the Institute in the areas of education, practice, research, and policy. The nurse will find resources and links to the following:



From Hartford Institute for Geriatric Nursing. Retrieved May 15, 2009, from www.hartfordign.com.



Making a Decision about a Care Facility


Until about 20 years ago, there were only two options for the elderly who could no longer live alone: move in with their children or move into a long-term care facility. In the mid-1980s, a new option was born: assisted living. Many elderly people needed help with things like housekeeping, meals, laundry, or transportation, but otherwise, they were able to function on their own. Baby boomers latched onto this concept, and the industry has grown exponentially. Perhaps the fastest growing care facility option is the continuing care retirement community (CCRC). These CCRCs often look a lot more like four-star resorts than long-term care facilities. Amenities may include restaurants, pools, fitness centers, and spas. Nonetheless, the attraction of CCRCs is health care for life. This type of community typically allows residents to live independently as long as they can and gives them access to more care, in the same location, when, and if, they need it. Today there are 1800 CCRCs nationwide, and they’ve been growing at a rate faster than nursing homes and assisted living facilities combined (Gengler, 2009).


The decision to move an older family member into any type of care facility is difficult for most families. It is often a decision filled with guilt, sadness, anxiety, doubt, and anger—even when the older person makes the decision. The difficulty of the decision is reflected in these comments:



As important as stressing the need for long-term care is dealing with the family’s feelings about placement. Many families view facilities negatively because of what they have seen in the media concerning neglect, abuse, and abandonment. Cultural considerations can also affect feelings about placement (see Evidence-Based Practice Box, Long-distance Care Giving).


A common feeling families express when faced with care facility placement is guilt. Guilt may come from several sources,



EVIDENCE-BASED PRACTICE


Cultural Issues in Care Giving: Personal and Family Dynamics Involved in Decision-Making when Nursing Home Placement is an Issue





Findings


Most (8/12) study participants preferred to live with their family while the other four preferred senior housing in the event they were to become bedridden. The reasons for their preferences were divided into three domains. The first domain wanted to maintain independence over decision making regarding money or personal time. The next domain was family issues. Korean Americans usually lived with the oldest son, but the participants acknowledged that these cultural norms were changing now that they lived in America and maintaining good relationships sometimes meant living apart. The last domain was services available to them. There were Korean American senior living and nursing home care options in the area that were acceptable to the elders in the study.


All acknowledged that if bedridden, they would most likely be placed in a nursing home.



Shin D: Residential and care giving preferences of older Korean Americans, J Gerontol Nurs 34(6):48, 2008.


including (1) pressures and comments from others (“I would never place my mother in a care facility,” or “If you really loved me, you would take care of me”); (2) family tradition and values (“My family has always believed in taking care of its own—and that means you provide care to family members at home”); (3) the meaning of nursing facility placement (“I’m abandoning my husband,” “I should be able to take care of my mother, She took care of me when I needed care,” or “You do not put someone you love in a nursing facility”); and (4) promises (“I promised Mother I would always take care of Dad,” or “When I married, I promised ‘till death do us part’”).


It can help to talk with family members about the potential benefits of a care facility. For many people it is not easy walking into a care facility for the first time. It is helpful to prepare families about what to expect and to give guidelines for evaluating facilities, moving an older family member into a care facility, and helping an older family member adjust to the changes.


For more information, see Questions to Consider When Moving from Independent Living to a Supervised Living Facility (Box 6–2; Box 6–3) and Internet Resources (Table 6–1).






Financial and Legal Concerns


Major financial issues some families face include paying for long-term care, helping an older person who has problems managing money, knowing about and accessing resources for the older family member whose income is not sufficient, and planning for and talking about potential incapacity.


One of the most important things a nurse can do is to become knowledgeable about the community resources that can help families who are faced with financial and legal concerns, eligibility requirements for programs, program access issues, and options for older persons who need assistance in managing their finances. If a family and their older relative have not already discussed potential financial concerns, encourage them to do so.


Many families do not discuss finances before a crisis—and then it is often too late. Sometimes adult children hesitate to discuss financial concerns for fear of appearing overly interested in inheritance. This is the last subject that parents want to talk about with their children, but it is also the most important. Children should convey that they don’t want to know how much their parents have—or might leave in their will; rather, they want to make sure there is a current and complete plan. When a person has been diagnosed with Alzheimer’s disease or a related disorder, it is critical that the family make financial and legal plans while the older person is able to participate. At this point, it would be appropriate to execute a general durable power of attorney, which appoints someone to act as agent for legal, financial, and sometimes health matters when the person is no longer able to do so (Greenberg, 2008). Once the person becomes incapacitated, if plans have not been made, the options are fewer, more complex, and more intrusive. A family may need to seek a conservatorship, which requires court action.


Older persons with limited mobility, diminished vision, or loss of hand dexterity may need only minimum assistance with finances (e.g., help with reading fine print, balancing a checkbook, preparing checks for signature, or dealing with Medicare or other benefit programs). Others who are homebound because of poor health but who still are able to direct their finances may need someone to implement their directives. In such situations a family’s objective should be to assist, not to take away control. The goal is to choose the least intrusive intervention that will enable the older person to remain as independent as possible.



End-of-Life Health Care Decisions


The use of life-sustaining procedures is another difficult decision, especially when family members are uncertain about the older person’s wishes or they disagree about “what Mom (or Dad) would want.” The main interests of patients nearing the end of life are pain and symptom control, financial and health decision planning, funeral arrangements, being at peace with God, maintaining dignity and cleanliness, and saying goodbye (Auer, 2008).


It is important for the nurse to realize that life’s final developmental stage ultimately ends in death. Thus, end-of-life decisions are common for most patients and their families. Often this process does not begin until after the patient has lost the ability to participate in the decision. Some patients and families may need repeated reminders to handle these decisions. Goal setting can be a useful tool to help them along. In addition, the caretaker could mention that they have completed some of the same planning for themselves (Auer, 2008) (Table 6–2).



End-of-life caregiving by health care professionals differs greatly from that provided by family members. For health care professionals, there is usually a wealth of experience to draw from and support from colleagues to share in the burdens. Families generally do not have the same life experiences to draw from in these situations. In a study by Phillips and Reed (2009), eight themes were identified to form the core characteristics of end-of-life caregiving:



1. It is unpredictable. Each crisis could be the last or just the next in a series of crises.


2. It is intense. It is constant and engulfing. There is a feeling of overwhelming responsibility that cannot be shared.


3. It is complex. Complex treatment regimens must be balanced with complex interpersonal relationships with the patient and other family members.


4. It is frightening. Situations such as falls, bleeding, behavior problems, or medication reactions frighten many caregivers.


5. It is anguishing. Watching the suffering of a beloved family member causes many caregivers severe angst.


6. It is profoundly moving. There are many precious moments with spiritual or sacred overtones.


7. It is affirming. Bonding with the elder patient is a moving experience.


8. It involves dissolving familiar social boundaries. Caregivers and elders share intimacies such as toileting, changing diapers, or catheter care, which would otherwise not be shared.



The Issue of Driving


Driving is a critical issue for seniors—and for this country. Older drivers are more likely to get into multiple-vehicle accidents than younger drivers, including teenagers. The elderly are also more likely to get traffic citations for failing to yield, turning improperly, and running red lights and stop signs, which are indications of decreased driving ability. Car accidents are more dangerous for seniors than for younger people. A person 65 or older who is involved in a car accident is more likely to be seriously hurt, more likely to require hospitalization, and more likely to die than younger people involved in the same crash. In particular, fatal crash rates rise sharply after a driver has reached the age of 70 (Senior Citizen Driving, 2008).


Obviously, safe driving is an important issue for our country’s older adults. Everyone ages differently, so some people are perfectly capable of continuing to drive in their 70s, 80s, and beyond. Many elders, however, are at higher risk for road accidents. A few of the factors that contribute to increased risk are



Driving symbolizes autonomy, control, competence, self-reliance, freedom, and belonging to the mainstream of society, so most older persons alter their driving when their abilities decline. They may drive only during daylight hours, avoid heavy traffic times, limit the geographic area in which they drive, or limit driving to less complicated roadways. Some couples begin driving in tandem with the passenger acting as copilot. Sometimes after the death of a spouse, family members notice that “for the first time, Dad is having problems with driving.” What they may not realize is that Dad had problems with driving before his wife died, but she had served as his eyes and ears when he was behind the wheel.


Families face a difficult time when an older relative shows signs of unsafe driving. They may be both worried about safety and reluctant to raise concerns with their family member or to take action. The issue is even more complicated when the older person is cognitively impaired and does not perceive his or her deterioration and potential driving risk. Studies show that persons with Alzheimer’s disease are likely to rate themselves as highly capable of driving when they are not.


Sometimes a family member may rationalize that “Mom only drives short distances in the neighborhood” or may think “I just can’t ask Dad not to drive. The car is too important to him.” Some families are continually faced with a cognitively impaired person who cannot remember from day to day that he or she cannot drive and insists on driving.


Families may need assistance in assessing a person’s driving ability and how to best carry out a recommendation that their relative should limit or discontinue driving. Health care professionals play a critical role in discussing the issue of driving with older persons. Some older persons view health care professionals as more objective than the family and thus are more willing to listen to their advice and recommendations. Many participants in focus groups indicated that family advice alone would not influence their decision to quit driving. A written prescription from a physician or other health care professional that simply states “no driving” may remind the cognitively impaired person and divert blame from the family. Families also may need information about how to make a car inoperable for the cognitively impaired person.


If family members will be addressing the issue of driving with an older relative, the nurse could suggest they first check some of the resources in Table 6–3.




Family Caregiving


Family caregiving is primarily provided by the adult children of the elderly person. Often the varying levels of participation among siblings can cause stress within the family. It is important for the nurse to recognize the types and levels of family caregiving (Willyard, Miller, Shoemaker, & Addison, 2008):



Providing care to frail, dependent older adults is increasingly common because of the rapidly aging population. While nearly a quarter of caregivers are spouses, 70% to 80% of all parental caregiving is still provided by middle-aged daughters. In addition, the type of care provided for parents by women is different than that provided by men. Just as the age-old concepts of “women’s work” and “men’s work” imply, there is a division of labor in family caregiving. Women are most likely to handle the more time-consuming and stressful tasks like housework, hygiene, medications, and meals. Men are more likely to handle things like home maintenance, yard work, transportation, and finances (Willyard et al, 2008).


Caregiving may evolve gradually as a family member becomes frail and needs more assistance, or it can begin suddenly as the result of a stroke or accident. A family may adjust better to the demands of caregiving when a relative’s need for support gradually increases rather than when the person’s functional ability declines rapidly.


A family member with a dementing illness such as Alzheimer’s will require increasing levels of support and assistance as the disease progresses (see Evidence-Based Practice Box). The need can progress to where help is required 24 hours a day. Caregivers of dementia patients often report symptoms of tiredness and depression because of the high levels of stress (Topo, 2009).


Losing the person that family members have always known is one of the most difficult aspects of coping with a progressive, dementing illness. As one woman said, “I’ve already watched the death of my husband. Now I’m watching the death of the disease.” Another stated, “The personality that was my husband’s is no longer present. I feel as though I am tending the shell of who he was—that is, his body. That is all that remains.”


More and more families are faced with long-distance caregiving. They may find themselves driving or flying back and forth to repeated crises, spending long weekends “getting things in order,” or “constantly checking on Mom and Dad.” Such


Nov 26, 2016 | Posted by in NURSING | Comments Off on Family Influences
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