Helping families hold on to loved ones with Alzheimer’s

As most caregivers in LTC settings know, caring for residents with dementias is complex and challenging. The path of cognitive decline differs for each affected individual and impacts all aspects of function. In early stages, the individual suffers the frustration and distress of knowing that capabilities are being lost; in later stages, remnants of physical appearance may be all that is recognizable of the person who once was.

The impact of dementia is profound not only for the affected individual, but for his or her family as well. It is difficult to measure the emotional pain of an adult son who has to bathe his mother after she has been incontinent, or a grandchild whose Granny behaves in a threatening manner or a wife who isn’t recognized by the husband with whom she once shared lovemaking. The pain does not subside when the person enters long-term care; it merely changes.  

The family is an important consideration in caring for persons with dementias. In addition to being sources of information that enable individualized, effective care, continued family involvement offers residents a connection with a significant past. Although they might not recall the names or relational status of family members, persons with dementias may sense something positive and familiar when in the presence of relatives, thereby gaining emotional comfort and peace. Also, it is beneficial for staff to have family members available to discuss care options and provide assistance (e.g., contacting providers, obtaining clothing, accompanying the resident to the hospital).   

With the important role families serve, efforts should be made to support and encourage their involvement in residents’ care. To accomplish this, consider their care needs.

ASSESSING THE FAMILY

After the initial flurry of activity involved in the admission process subsides, it can be useful to allocate time to talk with the family. Advise them that family information is helpful to better serve the resident and family unit. Some questions to explore this dynamic include:

•  While reviewing these core areas, issues may surface that may warrant further discussion. For example, a resident’s daughter may divulge: "I have a brother who lives out of town, seldom visits and doesn’t accept that our mother has Alzheimer’s disease. He does nothing to help, but he is quick to second-guess my decisions and has criticized every caregiver we had for mother when she was at home.” With this background, the staff can anticipate some of the problems that could surface when the son visits and perhaps develop a plan to keep him abreast of his mother’s care.  

Learning about family dynamics may not be possible during the admission assessment. Time can be scheduled later, after the stress of the admission process has diminished and some rapport established, to explore these issues with the family.

UNDERSTANDING THE FAMILY

Through the history, conversation and observation, various needs can be identified, which can vary among members of the same family based on long-standing family dynamics, individual life circumstances and their acceptance of their relative’s dementia.

Family dynamics. The roles, responsibilities and relationships among family members can be quite complex. For example, family members can fill the roles of:

•  Decision maker: This person who is granted or assumes responsibility for making important decisions or is called on in times of crisis. He or she may not be geographically close or involved in daily activities but is consulted for problem solving and could serve as the surrogate decision maker.

•  Caregiver: This provider of direct services looks after or assists with personal care and home management; this individual often is a great resource to professional caregivers.

•  Deviant: This “problem child” has strayed from family norms; he or she may become the family scapegoat or provide a sense of purpose for family members who “rescue” or compensate for this individual. Although this individual may not assume responsibilities, he or she may hold a special place in the heart of the person with dementia.

•  Dependent: This individual relies on other family members for economic or caregiving assistance. Although not as impaired as the relative with dementia, this person could compete for the family's attention and resources.

•  Victim: This person forfeits his or her legitimate rights and may be physically, emotionally, socially or economically abused by the family; this person may have been abused by the person with dementia and, therefore, be uninterested and uninvolved in the person's care.¹

Staff should not judge family members based on the roles and responsibilities they fill or on the reports from other relatives. For example, the resident’s daughter may be a highly responsible person who takes care of her mother’s affairs, accompanies her to appointments, maintains her home and visits frequently. On the other hand, there may be a son who does nothing to help his mother, loses jobs frequently because his frequent late night partying causes him to miss work, and seldom visits his mother. Yet, the mother prefers the rare visits of her son over her daughter’s regular visits and finds pleasure in hearing about the latest escapades of her son and his buddies. Both children serve their mother in different ways.

There might be times when staff question (and are critical) of a family member who has an uncaring attitude.  Remember that this behavior may be the result of the resident’s poor treatment of that person. The resident may have abused the spouse who now seldom visits or neglected the children who prefer not be called when the resident has a need.

Individual life circumstances. The lack of frequent visits or participation in care activities does not necessarily imply a lack of caring on the part of the family. Geographic distance often is a reason for uninvolved family members, compounded by limited finances to travel for visits. Family members may be overwhelmed with health problems or those of a spouse or child. Strained marital relationships, problems with children and a demanding job could leave little time and energy to visit and engage with the resident. If staff is aware of such problems,, the social worker could direct the family members to community resources that could assist them.

Acceptance of a relative’s dementia. Most people are devastated to learn of the diagnosis. Accepting that a loved one has dementia is neither a quick nor easy process. The loss of the relationship with the family member affected by dementia can trigger reactions commonly associated with grieving: denial, depression, anger, bargaining and acceptance. The journey to acceptance may transition smoothly through the various stages, but rather, take emotional detours. Patience and understanding are essential to give families time to navigate through their emotions.

Caring for the family. Dementia profoundly affects the family; therefore, dementia care equates to family care. A basic element in assisting the family is providing information. Do not assume that the family is knowledgeable about the disease because the relative was cared for at home. An assessment of knowledge about the realities of the disease and expected course are important. Education to address knowledge deficits can then be addressed.

Family members may desire regular contact with the relative but find visitation challenging. Offering suggestions for activities that can be shared with the relative based on the stage of the disease is part of educating family members. 

Keeping family members informed of changes in status, new problems and incidents prepares and equips them to navigate unexpected occurrences, which can alleviate their stress and facilitate positive relations with providers.

The demands, worry and unresolved feelings associated with having a relative with dementia can be overwhelming and produce considerable stress. Urge families to practice good self-care, which can range from visiting an out-of-town friend to giving them the location and meeting dates for a local support group.

SUMMARY

Be as supportive and compassionate in caring for family members as you are with their loved one. Be patient when they make critical comments and allow them a chance to vent, remembering that it may be the situation not your action that is the root cause of their behavior. Help them to feel comfortable during their visits and offer kind words, commending them for their continued involvement and concern for their relative. Let them know that you understand that the situation is difficult.  

Families play a significant role in the care of persons with dementias; however, their needs must be considered. In dementia care, the family is the patient too.

Charlotte Eliopoulos RN, MPH, PhD, is Executive Director of the American Association for Long Term Care Nursing. She is the author of 17 books and numerous articles and book chapters.For more information, email charlotte@ltcnursing.org.

Reference

1. Eliopoulos C.  Gerontological Nursing. Lippincott Williams & Wilkins: Philadelphia, Pa., 2010.

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