More than 5 million people have been diagnosed with some form of dementia (Alzheimer’s Association, 2012), a disease that can result in brain cell loss, memory impairment, decreased motor skills, problems with executive functioning, and behavior and personality change. There are more than twice as many family and friend caregivers as there are individuals with dementia (Alzheimer’s Association, 2012). A diversity of types of dementia exist; however, most types result in a progressive decline in cognitive functioning that can be categorized as early, middle, or late stages (Knight, 2004). Living with this diagnosis can impact the mental health of the individual with the disease and their family caregivers. Dementia patients and caregivers may be vulnerable to depression, anxiety, and stress. Unfortunately, mental health programs to support individuals affected by this diagnosis are limited. Gerontological nurses, who may have more frequent contact with patients and families, can thus play a key role in serving the mental health needs of this population.
Sources of Dementia Caregiver Stress
Caregiver stress is a part of the caregiver’s journey that has been well researched (Mittleman, Haley, Clay, & Roth, 2006; Romero-Moreno, Márquez-González, Mausbach, & Losada, 2012). Clinical experience and research have indicated that caregiver stress often occurs related to a multitude of factors—the experience of grief and loss (Meuser & Marwit, 2001), role changes and transitions (Mace & Rabins, 2011), poor instrumental and emotional support (Mittleman, Epstein, & Pierzchala, 2002), coping with behavioral concerns of loved ones (Torti, Gwyther, Reed, Friedman, & Schulman, 2004), and family/relationship conflict (Epstein, Auclair, & Mittleman, 2007). Nursing professionals should be attuned to these factors and how they affect the mental health of the caregiver. The experience of grief with cognitive impairment can significantly affect the caregiver. The term ambiguous grief has been used to describe the grief experience from a loved one with dementia because the individual’s personality, behavior, and relationships may change while he or she is still alive (Meuser & Marwit, 2001). Moreover, the caregiver experiences multiple periods of grief because new losses of independence, behavior, and personality changes can occur as the disease progresses.
Middle-stage dementia can yield problems in completing multistep tasks such as driving, paying bills, maintaining a schedule, medication management, and completing household chores. Stress ensues when the caregiver must assume a leadership role in these activities, which requires more time and the acquisition of new competencies. Caregivers often lack information that helps them understand how the disease affects their loved one. Without this knowledge, caregivers are vulnerable to feeling increasingly stressed and overly reactive toward the patient as challenges increase. According to Torti et al. (2004), behavioral disturbances are the best predictor of caregiver burden. Behavioral disturbances can include wandering, agitation, and sexually inappropriate behaviors (Lawlor, 2002, p. 463). Caregiver stress and reactivity can evolve into a vicious cycle in which caregiver stress results in increased behavioral issues with the patient, thereby further exacerbating the stress of the caregiver (Mace & Rabins, 2011). Finally, relational conflict and change can ensue with progressive cognitive impairment. Caregivers may feel isolated from friends or receive less social support because of decreased time to spend with them. Family conflicts over major and minor caregiving decisions can also occur.
Sources of Stress in Individuals with Dementia
Correlates of stress in individuals with dementia parallel those of caregivers. Receiving a diagnosis of dementia can be traumatic for some patients. The result can be a process of readjustment and finding new daily routines. Individuals with dementia may experience a grieving process in which they must cope with anger, sadness, guilt, shame, fear, and anxiety (Cheston, 1998). Loss of independence can be particularly devastating for patients. These losses can include one’s ability to drive, pay bills, work, manage a team in the workplace, engage in certain hobbies, and interact with others with a high sense of efficacy. The patient may then internalize blame for these difficulties, thereby making negative attributions about themselves such as “I am defective as a person,” rather than “This disease is affecting my ability to perform this task.” Individuals with dementia may also work hard at covering up their memory and executive functioning deficits, which can increase anxiety and stress. Existential questions of meaning and purpose may arise due to these changed or decreased roles in the household, workplace, and family.
Changes in social support may be powerfully experienced by individuals even in the late stages of dementia. Family members, children, friends, and partners may distance themselves from the individual due to their own grief, denial, discomfort, and confusion about the dementia diagnosis. The process of deciding who to inform about the diagnosis can also be a stressor for the patient and caregiver. In addition, social activities may change as the person’s dementia progresses. Events in large groups may be overwhelming; some patients are concerned that they will not be able to recall the names and faces of individuals with whom they socialize regularly.
Therapeutically Engaging The Dementia Patient and Caregiver
Active or reflective listening skills can be one of the greatest assets in supporting caregivers and individuals with dementia. A model proposed by Miller and Rollnick (2002, 2013) as a part of motivational interviewing involves utilizing open-ended questions, affirmations, reflections, and summary statements (OARS). The OARS model—specifically the elements of open-ended questions and reflections—provides a useful framework for building rapport with the caregiver or dementia patient and understanding his or her strengths and concerns. Reflective listening entails frequently paraphrasing the content and feelings of the patient or caregiver to convey that the nursing professional is listening, providing a sounding board for the patient or caregiver, and encouraging them to elaborate about anything affecting their mental health. Open-ended questions and prompts serve a similar function and empower the individual to process their stressors and identify solutions. A brief example is presented of the active listening process with a caregiver discussing her relationship with her spouse who has middle-stage dementia:
Caregiver: I just don’t know what to do when he takes on tasks he used to be able to do around the house. He starts working and leaves a mess. And he’s not able to fix things like he used to.
Gerontological nurse: Sounds like you’re feeling frustrated and overwhelmed (reflection of feeling) when your husband takes on these tasks (reflection of content).
Caregiver: [Throws up her hands in exasperation.] Yes! And he becomes angry when I ask him not to do some of these “fix-it” jobs.
Gerontological nurse: It’s difficult to know how to respond to these situations (reflection of content).
Caregiver: What’s worse is that when I’m more stressed, I feel like I’m mean about it. There’s probably better ways to handle this.
Gerontological nurse: What do you think you can do differently in these situations that will be more helpful? (open-ended question)
Affirming strengths and healthy coping should also be a focus of every interaction with a patient and caregiver. This empowers the patient or caregiver to identify internal and external resources and to ask for additional support (Miller & Rollnick, 2002, 2013). For instance, the counselor in the above example might affirm the following caregiver qualities: “I can appreciate your level of awareness about your own feelings and stress level,” or “I hear a desire within you to learn how to interact more effectively with your husband.” These affirmations may elicit both motivation and increased involvement in the problem-solving process by the caregiver. Summary statements are longer reflections that tie together the themes and solutions of the conversation (Miller & Rollnick, 2002, 2013). Summaries should be used periodically throughout the conversation, providing caregivers and dementia patients the opportunity to review, rehearse, and integrate the topics, coping skills, and resources under discussion. The remainder of this article centers on providing stressor-specific helping skills that facilitate strengths-based coping and problem solving.
Care for The Caregiver
In the following sections, specific strategies for reducing the negative impact of the above stressors are discussed. In supporting caregivers coping with grief and loss, coming alongside them and providing a listening ear can be among the most helpful things to do (Altmaier, 2011). Recommending attendance at Alzheimer’s Association support groups or related community groups may also be helpful. Furthermore, it is important not to minimize the caregiver’s grief with statements such as “This has all happened for a reason.”
Grief, loss, and transition stress related to role change is important to discuss. Normalizing and providing information on this topic can be helpful. Nurses can ask questions such as “How have your roles changed since your partner’s dementia diagnosis?” “What change in roles has been most stressful or challenging?” After listening reflectively and understanding the presenting concern, the nurse can inquire, “What are some unhelpful ways you have dealt with this stress?” and “What are some helpful ways that you have coped with this transition?” Finally, goal setting questions such as “What is one thing you can do for yourself to help cope with this transition?” Nurses should aid the caregiver in making the coping goal specific and measurable. Inquiring about the caregiver’s receipt of social support is important. Nurses can use scaling questions to assess the caregiver’s perception of social support from the following prompt: “On a 1 to 10 scale, with 1 meaning extremely dissatisfied and 10 meaning extremely satisfied, rate your satisfaction level with task support in your life currently.” If this is low, reflective listening can be used to explore this further, and similar goals can be set across domains. Additionally, caregivers may be overwhelmed by the tasks of caregiving and can benefit from identifying other friends and family willing to aid in the caregiving process.
Behavioral disturbances exhibited by the individual with dementia can also be explored. Nurses can help caregivers identify factors preceding behavioral symptoms and helpful caregiver responses. Nurses can facilitate a discussion on how the caregiver can manage his or her own stress reactions to behavioral disturbances of the individual with dementia. Unhelpful self-talk in response to dementia patients’ behavior increases stress. For instance, a person with middle- to late-stage Alzheimer’s disease exhibits refusal behavior regarding going to bed. The caregiver thinks to himself, “She knows I’m tired. Why is she doing this to me?” In this case, the nurse can encourage the caregiver to challenge this unhelpful self-talk that results in stress. Most importantly, gerontological nurses can encourage caregivers to constantly assess their own stress levels throughout the day. With this self-knowledge, caregivers will know when they are vulnerable to being more reactive to the individual with dementia, suggesting the need to take a self-care break.
Care for The Individual with Dementia
Gerontological nurses can apply effective strategies for addressing significant stressors in the life of their patients with dementia. In patients with early- to middle-stage dementia, nurses can explore role change stressors with the patient by asking about changes that have been the hardest and feelings that have been difficult to process. The patient may express resentment about losses such as his or her driver’s license or no longer handling finances for the household. It is critical to not patronize or minimize the patient’s feelings by responses such as, “Well, you know you can’t drive anymore because you get confused and disoriented and have trouble making it home.” This immediate response denies the underlying issue: the patient’s feelings. The feelings should first be validated by statements such as, “It sounds like you are feeling frustrated with your driving privileges being limited and are worried you will burden your spouse with driving you places.” At the same time, it is important for the nurse to reiterate in a firm but gentle manner that driving is no longer possible, if this is the case.
However, nurses should empower dementia patients to identify solutions and strengths. The nurse could thus inquire about how the patient copes with frustration and guilt about feeling like a burden. The nurse can also help the patient identify what activities he or she struggles with and areas he or she would like additional caregiver support. On the other hand, the nursing professional can inquire about the strengths and abilities the patient retains and what that means to him or her. Further, the nurse can support the patient in mobilizing these strengths and transferring them to address weaker areas of functioning. For instance, perhaps the nurse and patient can identify additional ways the patient can help out around the house or acceptable means of vehicle use (based on evaluation of the patient) such as driving to the corner gas station or to the mailbox. This information can be shared and discussed at length with the caregiver. Ideally, the nursing professional can speak with both the caregiver(s) and patient together to address stressors.
Engaging The Dementia Patient and Caregiver Together
Talking together with the individual with dementia and his or her family caregiver can yield beneficial results regarding the mental health of all parties involved, particularly with individuals in early to middle stages of the disease. The nursing professional should set the stage by noting that the purpose of talking together is to listen to each other and develop solutions based on the needs of each person. A helpful format is to ask each person to identify a stressor that he or she wants the other individual’s support in addressing. For instance, the patient may note feeling disconnected from his or her family. The nursing professional can then ask the patient about times with family caregivers in which he or she felt connected and how to increase these moments. Overall, the nurse can help the caregiver and patient identify mutually agreed-upon areas in which each needs different avenues of support.
The authors have presented information on common stressors for individuals with dementia and their caregivers, a framework for engaging with these individuals, and helping skills to be used by gerontological nurses in empowering coping skills of dementia patients and caregivers. In addition to these helping skills and strategies, the importance of referral resources and tangible supports cannot be overstated. Nursing professionals should consider referring caregivers and individuals with early- or middle-stage dementia to available dementia support programs or counselors specializing in older adult issues. Information on local senior services should be made available as well as book and Internet resources. Adult day care centers, respite care, and retirement community resources are important when care needs exceed the capacity of the caregiver.
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