How to Be a Caregiver for an Aging Parent with Dementia

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Redirecting and asking someone to tell you about the person he has asked about or about his home is a better way to calm a person with dementia. You Cannot Be a Perfect Caregiver. Just as there is no such thing as a perfect parent, there is no such thing as a perfect caregiver. You have the right to the full range of human emotions, and sometimes you are going to be impatient or frustrated. Learning to forgive your loved one as well as yourself is essential in the caregiving journey.

Therapeutic Lying Reduces Stress. We tend to be meticulously honest with people. However, when someone has dementia, honesty can lead to distress both for us and the one we are caring for. Does it really matter that your loved one thinks she is the volunteer at the day care center? If you ask your loved one to not do something ever again, or to remember to do something, it will soon be forgotten.

For people in early stage dementia, leaving notes as reminders can sometimes help, but as the disease progresses, this will not work. Taking action, rearranging the environment, rather than talking and discussing, is usually a more successful approach. Telling the doctor what you see at home is important. In response to caregiver strain, daughters also described feeling resentful towards their parents when the tasks became overwhelming.

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One daughter describes it:. I think I had reached a point where I felt resentful toward her. I used to love the weekends. In response to competing life demands, daughter caregivers described reaching out to family members for help and relief. Often, the help was another sibling, and some caregivers shared that they had looked into either adult day-care or long-term care facilities for their parents. These coping strategies allowed the daughters to continue caring for their parents and buffered against developing compassion fatigue.

While this study did not confirm the presence of compassion fatigue as professional caregivers have experienced it, the interviews and statements from these daughters suggest that family caregivers might be at risk for compassion fatigue. This analysis provides evidence for many of the concepts from the model of the compassion fatigue process Figure 1 leading to a caregiver developing compassion fatigue.

Daughter caregivers articulated the contributing factors for compassion fatigue as an inability to detach, or attachment, other life demands, and an exposure to suffering expressed by the themes of uncertainty and doubt. Adult daughters in this study described feelings of uncertainty and doubt in response to caring for a parent with AD. Daughters perceived suffering of a parent and tried to minimize this suffering, but were often unsure how best to react and doubted their responses to distressing situations for their parents.

The themes of uncertainty and doubt found in this study are similar to the feelings of inadequacy and powerlessness experienced by nurse-daughters while assisting with care for a parent in long-term care Ward-Griffin et al. Based upon these and their other findings, Ward-Griffin and colleagues concluded nurse-daughters were at risk for compassion fatigue.

All daughters experienced strain and described competing life demands. Other studies have generated similar findings particularly when participants were adult children caring for a parent with dementia Conde-Sala et al. Strain and other demands often are associated with care-giver employment Conde-Sala et al.

One participant in this study described such exhaustion that she fell asleep behind the wheel while returning home from work. When considered in combination with the exposure to perceived suffering and a desire to minimize or alleviate the suffering, these other demands place the caregivers at risk for compassion fatigue. In addition, all 12 daughters articulated strong, ongoing attachment to their parent. However, the attachment between a daughter caregiver and parent might be a protective factor against compassion fatigue. Many daughters in this study linked their satisfaction with providing care to their relationship with their parent.

The daughters interviewed often spoke of attachment in a positive sentiment and it was their motivation to continue caring.

Additional, in-depth understanding of the relationship between attachment and the inability to detach would provide more information about the application of compassion fatigue to family caregivers. The findings from this study are similar to other studies of dementia caregivers and describe the difficulty in caring for a family member with dementia Bandeira et al. Healthcare providers need to be aware that family caregivers might be at risk for compassion fatigue, and more research on compassion fatigue in family caregivers is needed to fully understand compassion fatigue as experienced by family caregivers.

Future research might enable healthcare professionals to identify family caregivers who are at particular risk for compassion fatigue. With this knowledge, researchers might develop screening tools to help identify this vulnerable group of caregivers and track the outcomes of interventions designed to help family members cope more effectively with compassion fatigue.

Once compassion fatigue is recognized and effectively examined in family caregivers, healthcare providers will be positioned to develop and test interventions. Adult children caregivers represent a rapidly growing segment of the caregiving population and need interventions and assistance because they are suffering negative consequences of caregiving.

If nurses are able to understand and recognize compassion fatigue, we can alleviate selected contributing factors, such as an exposure to suffering, thereby protecting the caregiver from the development of compassion fatigue. Nurses can support family caregivers through interventions directed at decreasing uncertainty and providing caregivers with increased feelings of control and ability.

In addition, interventions designed to capitalize on the attachment between a caregiving daughter and her parent might allow care-givers the opportunity to draw resilience from their parent—child relationship. Further interventions might include anticipatory guidance and support for caregivers at risk for compassion fatigue. There are limitations that should be considered when interpreting the results.

This study included 11 daughters caring for a mother and only one daughter caring for a father. While different themes were not evident in our analysis between these daughters, a larger sample might reflect additional challenges related to caring for a father compared with a mother. Future studies should attempt to address this limitation and explore the effects of parent gender on daughter caregiver responses in further detail. Many daughters in this study who provided care in their home used outside services, such as adult daycare or had aides come into the home to assist with care.

Those that did not, relied on family members for respite care. By virtue of this, participants were already likely seeking help of some kind. It is possible, given the importance of support as a moderator for compassion fatigue, that women with little or no support may display indications of compassion fatigue to a greater degree than the daughters in this study. Lastly, the aims and research questions for this study differed from those of the parent study.

Caregivers in the parent study were asked to describe three difficult or stressful aspects of caregiving that occurred in the past month and to describe three aspects of caregiving they found to be positive, or events that went well in the past month.

This study is the first to explore the concept of compassion fatigue among daughters caring for a parent with dementia at home. Study findings demonstrated these daughters experienced contributing factors of compassion fatigue, and thus appeared to be at risk for developing compassion fatigue. These findings support the importance of a larger study exploring compassion fatigue and its contributing factors and consequences in this population. Future studies should examine compassion fatigue and the negative outcomes associated with it in at risk caregiver populations.

If compassion fatigue in family caregivers is well understood, healthcare providers may be able to assess family caregivers for its presence, and intervene. Healthcare providers, particularly nurses, are in a role to identify family caregivers at risk for compassion fatigue and provide emotional and practical support to these caregivers to reduce or ameliorate compassion fatigue.

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper. National Center for Biotechnology Information , U. Issues Ment Health Nurs. Author manuscript; available in PMC Dec Author information Copyright and License information Disclaimer. Address correspondence to Jennifer R. The publisher's final edited version of this article is available at Issues Ment Health Nurs. See other articles in PMC that cite the published article. Abstract Adult daughters face distinct challenges caring for parents with dementia and may experience compassion fatigue: Open in a separate window.

Semi-structured Interviews In the parent study, semi-structured interviews with care-givers were conducted by study staff psychology students, social workers, and nurses who had received 24 hours of training in using an interview guide. Data Analysis In Project ASSIST, caregivers were asked open-ended questions about their challenges and satisfactions with caregiving; audiotaped interviews were transcribed verbatim and verified for accuracy with the caregiver. Uncertainty The uncertainty theme is related to the adult daughter caregivers feeling unsure when caring for their parents.

As one caregiver stated when asked about a caregiving challenge: Another daughter caregiver explained: Another caregiver described the confusion she feels when trying to understand how dementia has affected her mother: As one daughter stated: She described a situation in which she cooked for her mother and developed negative feelings about herself because she did not feel that she could make her mother happy: In addition, caregivers tried to advocate for their parents.

As one daughter describes: Attachment As anticipated, daughters caring for parents with dementia were emotionally attached to their parents and expressed willingness to care for them. One caregiver told of lying in bed with her mother and enjoying the time with her: As one daughter said, So then I know what I need to do to care for her. Another caregiver articulated this: Even though the parent—daughter relationship changed, caregiving daughters also felt that their relationship with their parents was bettered through caregiving: When describing how she found satisfaction in caring, this same daughter continued: Many daughters felt their parents had not had a good life and through caring for their parents, the daughter caregivers were able to make up for this: This daughter, possibly experiencing compassion fatigue, expressed her hopelessness, anger, and frustration saying: Strain All of the daughter caregivers described competing life demands, another contributing factor for compassion fatigue.

One daughter fell asleep on her way home from work and was in a car accident: Another daughter described the stress she felt when trying to help her daughter plan a wedding, while caring for her mother: This same daughter discussed how difficult it is for her to do all of the things in her life that she would like to when she says, Juggling my time, taking care of the house here, and my house there, and my job and friends and family. One daughter describes it: Footnotes Declaration of Interest: The economic value of family caregiving, update.

Caregiver’s Guide to Understanding Dementia Behaviors

The Compassion Fatigue Scale: Its use with social workers following urban disaster. Research on Social Work Practice. For example, if the person insists on sleeping on the floor, place a mattress on the floor to make him more comfortable. Remember that we can change our behavior or the physical environment.

Dealing with Dementia Behavior

Consider installing new locks that require a key. Position locks high or low on the door; many people with dementia will not think to look beyond eye level. Keep in mind fire and safety concerns for all family members; the lock s must be accessible to others and not take more than a few seconds to open. Try a barrier like a curtain or colored streamer to mask the door. 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.

Ten Real-Life Strategies for Dementia Caregiving

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.

INTRODUCTION

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.

Ten Real-Life Strategies for Dementia Caregiving | Family Caregiver Alliance

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.

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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. Make sure the house is safe: 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. 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.

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