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Case Study: Mrs. Allen an Alzheimers dementia caregiver Author: Olimpia Paun, PhD, PMHCNS-BC, Rush University College of Nursing, Chicago, IL.

Overview: Mary Allen is a 70-year-old African American woman who appears her stated age and is very engaging in conversation. She reports that she stayed home to raise the eight children she had with Mr. Allen. After all children grew up, Mrs. Allen worked as a certified nursing assistant in a long-term care facility near her home. She retired a few years ago, around the time her husband started to show the first signs of Alzheimers disease. They live in the house they have owned since getting married and share it with one of their daughters and her two teenage sons. Mrs. Allen is a devout Baptist and is actively involved with her faith community as a volunteer. In addition to his newly diagnosed Alzheimers disease, her husband has a history of stroke, prostate cancer, and hypertension. Mrs. Allen has no history of chronic illness, but was recently diagnosed with elevated blood pressure (140/80). Currently, she is reluctant to take antihypertensive medication, but is deliberate in making dietary (low fat, low sodium) and physical activity (walking with a group of women 2-3 times a week) changes. Monologue: During her weekly home visits to manage Mr. Allens chronic conditions, the visiting nurse (case manager) sets aside time to talk with Mrs. Allen and to answer her questions. Mrs. Allen shares her own experiences in taking care of patients with Alzheimers dementia and acknowledges that it is different taking care of your own. Simulation Scenario 1 occurs in the Allen home during a regularly scheduled home visit by a nurse who is following up on Mr. Allens adjustment to newly prescribed medication and assessment of his

mental status and safety in the home environment. During this visit, the nurse notices some changes in Mrs. Allens appearance compared to a month prior: she is thinner, looks tired, and she reports a decrease in sleep to about four hours per night. When asked about these changes, Mrs. Allen replies: I have a lot of things on my mind and in my heart, but does not elaborate. The nurse assesses Mr. Allens sleeping pattern and finds out that he is not up at night except for an occasional trip to the bathroom. The nurse expresses her concern about the recent changes in Mrs. Allen and schedules her next visit in the evening, to also meet with Mr. and Mrs. Allens daughter. Monologue (visiting nurse) Mrs. Allens recent pattern of insomnia and weight loss coupled with her comment: I have a lot on my mind and in my heart indicate that she may be experiencing depressive symptoms related to her husbands gradual deterioration and the caregiving situation overall. The nurse makes deliberate efforts to convey empathy, respect, and her true presence when she is visiting this family but is hesitant to ask direct questions regarding Mrs. Allens feelings. Simulation Scenario 2 occurs in the Allens home, a month later, during the evening, with daughter present throughout the visit. At the next visit, the nurse meets with Mrs. Allen and her daughter and finds out that she and her sons are consistently participating in the care of Mr. Allen. The daughter is also concerned about her mothers weight loss and decreased sleep. While Mrs. Allen explains that her weight loss is related to the changes she has made in her diet and physical activity, she agrees that her stress level has recently increased. Her daughter encourages her to share her worries with someone she trusts (i. e. her pastor) if not with her or the nurse. Mrs. Allen replies that she is always busy and barely has any more time to continue her involvement with her church activities, as it is. Monologue (visiting nurse) the nurse realizes that Mrs. Allen is reluctant to share her feelings not only with her family members but also with a trusted religious figure (it turns out later that this is a

new, younger pastor, recently assigned to her church). She is concerned about the weight loss, persistent insomnia, and the fact that Mrs. Allens blood pressure is steadily increasing (todays value 146/82), while she is refusing medication. The nurse carefully conveys her concerns to both Mrs. Allen and her daughter, emphasizing that at this pace she may not be able to remain an effective caregiver for her husband. She suggests a referral for a consult with a Nurse Practitioner (NP) specializing in Geriatric Mental Health. At first, Mrs. Allen replied that there was nothing wrong with her mental health and dismissed the suggestion. The visiting nurse explained that this NP is familiar with issues related to dementia patients and their caregivers and that she is also prepared to treat medical conditions such as hypertension. After some deliberation and encouraging from both visiting nurse and her daughter, Mrs. Allen agrees to follow through with the referral. Simulation Scenario 3 occurs in the NPs office, a few weeks later. Sally Perry has worked as a Geriatric Mental Health NP in this community-based clinic for the past five years and is familiar with the neighborhood where Mrs. Allen resides. Mrs. Allen comes to her appointment wearing a neat summer dress and a cotton hat. She introduces herself and shakes Sallys hand, making eye contact. Sally invites her to sit down and asks her if shed like a bottle of water. Mrs. Allen declines and states that she is used to summer temperatures, as she grew up in the South. Sally sits next to her desk, facing Mrs. Allen, slightly leaning forward. She invites Mrs. Allen to tell her briefly what brought her in. Mrs. Allen states: My daughter is worried about my health, me not sleeping I am taking care of my husband who has dementia and his nurse is also worried about my blood pressure creeping up. Sally asks a few brief questions about her medical history, her family heart disease history, diet and exercise. She finds out that Mrs. Allen has a significant family history of heart disease (both parents and siblings). Based on this history, she has drastically reduced animal fat and salt intake and she is walking with a group of women from church 2-3 times per week at a local mall. Mrs. Allen denies any history of smoking, drinking alcohol or using illicit drugs. She also denies any

chronic conditions (diabetes, lung, kidney disease). Currently she is taking only calcium 1200 mg/day. She had eight pregnancies that resulted in eight live births. Her vital signs at the time of the visit are: BP 148/86 (sitting) and 146/82 (standing), HR 90, strong, regular, with a knee pain level of 2/10. She is 54 and weighs 135 pounds. She acknowledges recent weight loss, but is unable to state exactly how much. Sally notices the dress fits slightly loosely on Mrs. Allens body. Sally also asks about Mrs. Allens caregiving responsibilities for her husband, how she feels about the situation, and about her sleeping pattern. Mrs. Allen becomes slightly guarded when asked about her own feelings, but states she cant complain because her children are consistent in their help. She mentions support from her faith community and states her conviction that: God will not give you more than you can bear. In addition, Mrs. Allen describes a regular pattern of waking up around 2AM with inability to continue restful sleep afterwards. Sally concludes the visit praising Mrs. Allen for her caregiving work and emphasizing a need to maintain her health. She also emphasizes Mrs. Allens significant cardio-vascular family history and discusses a need to start antihypertensive medication. She prescribes Lisinopril po, 5mg/day for the next two weeks, with follow-up for dose adjustment. She also orders lab work. Mrs. Allen agrees to take the prescription and is reassured by the fact that this is a generic medication that will not cost her an arm and a leg. She sets up her next clinic appointment in two weeks. Monologue - PMHNP notes Presentation: 70 year old retired, African American woman, caregiver to husband with Alzheimers. Referred by visiting nurse. Chief c/o: elevated BP, insomnia. Currently taking no medication.

Family hx. significant for cardio-vascular disease. No other significant health hx.; denies ETOH, tobacco, illicit drugs use . Labs pending. Mental status exam: Carefully dressed, well groomed, poised, with good eye contact. Cooperative throughout interview, somewhat guarded when discussing feelings. Speech well modulated with slight Southern accent. Smiling appropriately, carefully choosing her words when answering questions. Emphasizes gratitude when asked about her feelings. Mood is stable and affect is appropriate, overall congruent with mood; slightly constricted when asked how she feels. No evidence of delusions/hallucinations with coherent thought process. Thought content includes religious/spiritual overtones in reaction to caregiving situation. Alert, oriented to time, place, and person, with good short and long-memory recall. Insightful with appropriate judgment when presented with rationales for antihypertensive medication initiation. Sensorium and cognition appear intact. Further diagnostic studies: Full blood count (FBC), Lipid panel, Electrolytes, Renal, Liver and Thyroid functions , Blood glucose level fasting (BGL), electrocardiogram (EKG) and urine analysis (UA). Summary of findings: Client is in no apparent distress, but has a steady pattern of elevated BP in spite of dietary and physical activity recent changes. She is a caregiver to husband with Alzheimers and has support from co-resident adult daughter and her two sons. Treatment with Lisinopril po, 5 mg/day initiated today. F/u for med adjustment and further PMH diagnostic evaluation scheduled in two weeks. DSM IV assessment: Axis I: 311.0 r/o Depressive Disorder NOS; minor depression

Axis II: Deferred Axis III: Hypertension Axis IV: Spousal dementia caregiver for past five years. Husbands condition is deteriorating. Axis V: GAF=80: insomnia, no more than slight impairment in social functioning with meaningful interpersonal relationships Prognosis: Hypertension: good with medication compliance and maintenance of low sodium,

low fat diet and regular physical exercise. Depression NOS: fair ; client voices no suicidal/homicidal ideation, she appears to have a strong support system at home and has strong spiritual/religious beliefs; her symptoms are related to her dementia caregiving situation and it is very likely they will exacerbate as her husbands condition worsens. Mrs. Allens prognosis depends on the support she receives in her role as dementia caregiver. Recommendations: 1) Initiate antihypertensive medication with close monitoring for gradual dose adjustment 2) Psychosocial support: individual therapy (interpersonal approach); family meetings; referral to caregiver support group 3) Consider antidepressant medication if symptoms exacerbate Simulation Scenario 4 occurs in the PMHNPs office two weeks later. Mrs. Allen reports compliance with Lisinopril and denies any unusual signs and symptoms. Her BP today is 142/72 (sitting) and 140/70 (standing). She reports maintaining her diet and the same level of physical activity. Her appetite is unchanged and so is her weight. Her night sleep remains limited to 4-5 hours

per night, but she reports taking a nap at the same time Mr. Allen dozes off in the afternoon. Sally reviews Mrs. Allens lab results which are within normal limits. The following dialogue ensues: Sally: What thoughts come to mind in the middle of the night? (leaning forward and following clients gaze) Mrs. Allen: I worry about the future, I know how much dementia can take away from a person, Ive seen it first hand when I used to work in a nursing home. Sally: You worry that you may have to make a decision about placement soon? Mrs. Allen: Yes, that I wont be keeping my promisealthough there was a time when I kicked him out of the house when I found out he had someone on the side Sally: Some time ago? (nodding her head) Mrs. Allen: Many years ago, we were in our 40s, but he repented and I found it in my heart to forgive him and now he needs us he was never a lazy man, he provided for us and now he cant even take care of himself. Sally: A heavy load to carryall these thoughtshave you talked with someone in church, your pastor? Mrs. Allen: Hes a youngster, just fresh out of school, I dont know him wellI used to talk with the old pastor before he passed a year ago Sally: I am sorry to hear about his passing, you must be missing him, what was it like talking to your old pastor?

Mrs. Allen: I did feel relief, he was an understanding man and he knew us from way back, he knew our difficultiesI cant believe Im telling you all this stuff Sally: Do you feel some relief when talking to me? (smiling) Mrs. Allen: Right now, I do, I dont know about later? I dont like to stir things up from the past Sally: Thank you for sharing these deep thoughts and feelings you are having about Mr. Allen, it really helps me see what your needs are as a caregiver. The visit concluded with setting up a new appointment in another week, for further monitoring of medication and planning further support of Mrs. Allen in her caregiving role. Monologue (PMHNP) Differential diagnosis: Depression NOS/minor depressive disorder Mrs. Allen meets only one item on criterion A for minor depressive disorder: insomnia nearly every day; most items under criterion A do not apply to her or are debatable. For example, her weight loss may be due to her dieting; her weight did not change in the two week interval since first appointment. Some fatigue may be due in part to lack of restful sleep at night and to demanding hands-on care provided for her husband. Criteria B, C, and D do not apply to Mrs. Allen, as she has no history of mental illness. Mrs. Allens brief statements about her husband indicate her longing for who he used to be. Although he is physically alive, dementia has taken a lot out of him as a person, husband, father and grandfather. Mrs. Allen is grieving these losses. In addition, there is a tinge of guilt in her story about kicking him out of the house for his indiscretions.

Although there are no available DSM IV-TR criteria, it is safe to say that Mrs. Allen suffers from chronic grieving related to years of providing care for a spouse with dementia. Recommendations for treatment include f/u for antihypertensive medication adjustment and grief-focused supportive individual, family and group counseling. Readings: Ott, C.H., Kelber, S., Blaylock, M. (2010). Easing the way for spouse caregivers of individuals with dementia: A pilot feasibility study of a grief intervention. Research in Gerontological Nursing , 3, 8999. Ott, C.H., Sander, S., & Kelber, S. (2007). Grief and personal growth experiences of spouses and adult child caregivers of person's with Alzheimer's disease. The Gerontologist , 47, 798-809. Ott, C.H., Lueger, R., Kelber, S., & Prigerson, H. (2007). Spousal Bereavement in Older Adults: Common, Resilient and Chronic Grief with Defining Characteristics . Journal of Mental and Nervous Diseases , 195, 332-341. Ott, C.H. (2003). The impact of complicated grief on mental and physical health at various points in the bereavement process. Death Studies , 27, 249-272. Prigerson HG, Horowitz MJ, Jacobs SC, Parkes CM, Aslan M, et al. (2009) Prolonged Grief Disorder: Psychometric Validation of Criteria Proposed for DSMVand ICD-11. PLoS Med 6(8): e1000121. doi:10.1371/journal.pmed.1000121 Sanders, S., Ott, C. H., Kelber, S. (2008). The Experience of high levels of grief in caregivers of persons with Alzheimer's disease. Death Studies, 31, 495-523.

Created: 2011