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Overview: Families provide a considerable amount of informal care and support for older adults living with dementia. And when an older adult with dementia is hospitalized, family caregivers should be seen as important sources of information and included as valuable members of the health care team. This article describes a best-practice approach to working with families and includes recommendations for using the Information for the Hospital Team About a Patient with Memory Problems form. For a free online video demonstrating the use of this form, go to http://links.lww.com/A301.
Harry Kessler is an 86-year-old resident of a continuing-care retirement community (CCRC). (This case is a composite based on our experience.) One year ago he was diagnosed with probable Alzheimer's disease in the early stages. His health history includes hypertension and benign prostatic hyperplasia, and he's had cataract surgery on both eyes. Six months ago, he and his family decided to sell his home of 50 years, and he moved into a facility where he could receive a range of levels of care. He now lives in the assisted living section of the CCRC, is independent in activities of daily living (ADLs) and needs assistance with most instrumental activities of daily living (IADLs). One month before admission to the CCRC he was assessed with the Mini-Cog; he was able to recall two out of three words and found to have an abnormal clock drawing test (see "The Mini-Cog," December 2007). He's adjusted well to the move, is a favorite of the staff, and is visited by his daughter and her family at least twice each week.
Late Sunday afternoon a nursing assistant notices that Mr. Kessler is more confused than usual. He tells her that he's "too tired" to visit with a long-time friend. She notifies the nursing supervisor, who finds that Mr. Kessler is short of breath, tachycardic, and unable to recognize his visitor; he also has difficulty answering orientation and recall questions. The nursing supervisor and primary care NP on call confer by telephone and decide to send Mr. Kessler to the ED by ambulance for further evaluation. Mr. Kessler's daughter, Jennifer Mackenzie, is called and notified of the transfer; she says she can be at the ED in an hour. The nursing supervisor calls the ED, speaks with the triage nurse, and provides information about Mr. Kessler's health history, medications, and usual functional status.
Watch a video demonstrating the use and interpretation of the Information for the Hospital Team About a Patient with Memory Problems form at http://links.lww.com/A301.
Get more information on why it's important for nurses to work with families and use them as valuable resources when caring for hospitalized older adults with dementia.
These are Try This approaches in their original form. See page 57.
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Mr. Kessler spends four hours in the ED. He is diagnosed with new-onset atrial fibrillation, mild heart failure, and a change in mental status. He's admitted to the hospital telemetry unit at 1 AM on Monday. By the time Mr. Kessler arrives in his room he is increasingly agitated and delirious. The night-shift nurse obtains some background information from Ms. Mackenzie and documents Mr. Kessler's preadmission health and functional status. Ms. Mackenzie is encouraged to stay with her father overnight. Nursing and medical interventions are started for the atrial fibrillation, heart failure, and delirium. During the night Mr. Kessler stabilizes. By 7 AM he remains disoriented but is less agitated. When the day-shift staff arrives, Mr. Kessler's nurse suggests that they contact the unit social worker and discharge planning nurse and, as a team, work together with the family to complete the Information for the Hospital Team About a Patient with Memory Problems form.
Hospitalization can be traumatic and fraught with complications for any older adult. Family members are also likely to be anxious about their relative's acute illness, course of the hospitalization, and discharge plans. (For more information, see Why Is It Important to Work with the Families of Older Adults with Dementia?1-18 at left.) To minimize complications and improve outcomes, Hall and Maslow have suggested a model of care (see page 57). It includes three approaches as well as a form for collecting essential data from family members or other caregivers. In some cases it may be appropriate to include staff from the patient's residential facility in this process.
Ask the family about the patient's usual functioning to help hospital staff provide care. An older adult's ability to perform ADLs and IADLs often deteriorates during hospitalization.19, 20 Serious complications, such as pressure ulcers, malnutrition, and incontinence may result.21, 22 Understanding how well the patient usually functions will help clinicians individualize care and better preserve functional ability.
The Information for the Hospital Team About a Patient with Memory Problems form (see page 58) ties in with this approach. Developed by Hall and Maslow, it's based on their experience with hospitalized patients with dementia and is adapted from two previously published forms.23, 24 The form asks family members to answer 20 questions intended to provide the health care team with information regarding ADLs, speech and language, previous falls, behavior patterns, and other important baseline information.
Involve the family in care. Although involving family members in care makes sense, it still isn't routinely done in most U.S. hospitals.25 Family members often aren't involved in decision making, asked about the patient's care preferences, or instructed in how to assist with caregiving during an acute illness.26, 27 Yet they often want to be involved28 and can give important information, especially when the patient's illness is accompanied by delirium or when preexisting dementia makes history-taking difficult or impossible.
People with dementia often rely on routines that can be replicated in the hospital, with family members' help.29 Such information should be documented whenever possible. In some cases, family members may not want to be involved in care decisions or may be unable to provide care during hospitalization or after discharge; some patients may not have any family members who can be asked. In these situations, the team may be able to find others, such as friends or neighbors, who can be asked. (For more information on the importance of involving family members in the hospital care of older adults, see "The Family Preferences Index," September.)
Inform and train family members. Most families want information about their loved one's acute illness and how hospitalization might affect preexisting conditions such as dementia. They also want to help with postdischarge care. In one study, hospitalized patients and caregivers identified "managing and negotiating care" as an area of concern; this included obtaining information during the hospital stay, acquiring necessary medical equipment after discharge, finding appropriate resources, and coordinating services.30
Planning for discharge begins on admission. Patients and family members should receive written materials describing treatment of the acute illness, the medication regimen, and discharge instructions. The nurse should also provide training in postdischarge care, such as assisting with ADLs or giving medications, demonstrating as needed. Some patients and families will know very little about dementia; they can be referred to resources such as the Alzheimer's Association (http://www.alz.org) and the Alzheimer's Disease Education and Referral Center (http://www.nia.nih.gov/alzheimers).
In Mr. Kessler's case, the CCRC nursing assistant recognized the change in his behavior very early and informed the nursing supervisor, who made essential telephone calls to Mr. Kessler's daughter and to the ED triage nurse, setting the stage for both family and facility involvement in his care. The telemetry unit nurse also recognized the need for family involvement and initiated a team-based approach to care that included completion of the Information for the Hospital Team About a Patient with Memory Problems form.
The form is designed to be completed by either family members on their own or by nurses or other team members in collaboration with the family. It can be included in admission paperwork, and items can be added or deleted as necessary.
When asking a family member to complete the form, the nurse should explain its purpose and describe how the hospital staff will use the elicited information. Family members should understand that the purpose of the form is to provide hospital staff with specifics about the patient's functioning in the weeks preceding hospitalization and that the information will be used to help individualize care plans, treatments, and discharge plans. It may also be appropriate to add a written statement to the top of the form that reinforces its importance, such as, "The information you provide will help us to give the best possible care to your loved one. Thank you for your help."
Because of the various ways the form can be used, neither the length of time for its completion nor the ideal environment for completing it has been established. In our experience, a nurse completing the form by interviewing a family member may need as much as 30 minutes. It may be more efficient to give the family member a quiet space and basic instructions, and let her or him record the answers. In that case, 15 minutes is usually sufficient.
Challenges. The hospitalization of a loved one is highly stressful for families; their level of anxiety should be considered when asking family members to complete the form. Be flexible and provide options; for example, ask the family member whether she or he would prefer to fill out the form alone or with assistance, and explain that one person does not have to complete the entire form-more than one family member can be involved.
The Information for the Hospital Team About a Patient with Memory Problems form has not been tested in non-English-speaking populations or translated into other languages. For further information about how to use the form in patients of different cultures or ethnicities, read an online-only discussion of caregiver stress and ethnic diversity at http://links.lww.com/A539. (To view the section of the online video in which a nurse administers the form and a team meeting including a family member is held, go to http://links.lww.com/A302.
The three approaches described above and the form itself don't have associated scoring systems. The information obtained should be interpreted on an individual basis. Where the form reveals specific needs, strategies to address those needs should be incorporated into the plan of care. For example, if the patient has a history of falls, the nurse can institute strategies in falls assessment and prevention and, if appropriate, make an early referral for physical therapy.
Mr. Kessler's nurse worked with his daughter to complete and review the form. The results confirmed that Mr. Kessler was able to eat and drink independently, and the nurse taught his daughter about the fluid restriction that's part of treatment for heart failure. It was noted that although he needs glasses to see clearly, they were left behind at the CCRC; his daughter planned to bring them that afternoon. The form also revealed that although Mr. Kessler sometimes became anxious and more confused when watching televised news programs, he enjoyed and was often calmed by jazz and classical music. The nurse suggested that his daughter bring in his portable radio to keep by the bedside. As they talked, the nurse realized that although Ms. Mackenzie wanted to be involved in all aspects of her father's care and discharge planning, she was exhausted by trying to maintain her regular home and work schedules. The nurse and social worker encouraged her to take regular breaks and to go home to sleep. They agreed that if Mr. Kessler started to exhibit signs of delirium, someone on staff would call her.
Everyone on the health care team should have access to the information entered on the form, which should be scanned into the patient's electronic medical record or added to the patient's hard copy chart if there is no electronic documentation system in place. It may be appropriate to copy some of the data into other documents, such as the plan of care. Information should also be shared during clinical rounds. Nurses can take the lead in communicating information about how the patient usually expresses pain, as well as strategies for calming the patient if she or he becomes aggressive, agitated, or fearful. When discussing the patient and family, give specific information on their preferences and abilities, and incorporate additional suggestions as necessary. For example, if a patient needs help with bathing or eating, the nurse should share that with the team. (See Best Practices: The Long-Term Perspective,31-33 at left.)
It's important to review and confirm caregiver preferences and needs, particularly as the patient gets closer to discharge. For example, the nurse might say, "I see that before your mother was hospitalized, she didn't need help getting to the bathroom. She's had a catheter in place for two days. We'll remove it today, but she might need help getting to the bathroom when she goes home. In the meantime, tell us a little more about her habits-for example, how many times she usually gets up to go to the bathroom at night-so we can come up with strategies that might help after discharge." (To view the segment of the online video in which a nursing expert discusses the best-practice approaches examined in this article and how it can improve outcomes, go to http://links.lww.com/A303.
Mr. Kessler's heart failure and atrial fibrillation were controlled by the third day of hospitalization, and he had fewer episodes of delirium. His daughter's help with walking and feeding helped to stave off further decline. Because delirium may persist after an acute hospital stay and is associated with poor outcomes, Ms. Mackenzie, the day-shift nurse, and the discharge planning team contacted the CCRC staff and discussed Mr. Kessler's current abilities. They agreed that a short stay on the nursing home unit of the CCRC for rehabilitation would be beneficial, with return to the assisted living unit as soon as possible.
The Information for the Hospital Team About a Patient with Memory Problems form was created by Hall and Maslow on the basis of their experience in working with this population and on two previously created forms.23, 24
* Reliability and validity. There have been no published reports of the reliability and validity of the form.
[white circle]Sensitivity and specificity. There have been no published reports of the sensitivity and specificity of the form.
Both patients and caregivers face significant challenges.
A growing body of literature suggests that people with dementia and their caregivers are particularly vulnerable to systems of care that either don't recognize or can't meet their needs. The consequences can be devastating. Current evidence shows that there's a higher incidence of comorbidity among patients with cognitive impairment than among cognitively intact patients.1-4 The patient with both cognitive impairment and other illness is at a higher risk for preventable hospitalizations and death.5, 6 The presence of both dementia and comorbid conditions may lead to inaccurate reporting of symptoms, delayed or inadequate treatment of the comorbidities, and nonadherence to prescribed therapies.7-10
Caregivers of people with Alzheimer's disease or other forms of dementia also face significant demands. Many work full time; two-thirds report missing work because of their caregiving responsibilities.11 A greater caregiver burden has been associated with depression,12-14 a poorer health-related quality of life for both caregivers15 and patients,16 and earlier nursing home placement of patients with Alzheimer's disease.17, 18 A national survey conducted in 2003 by the Alzheimer's Association and the National Alliance for Caregiving found that 41% of caregivers of people with Alzheimer's disease reported high levels of emotional stress, and 18% consider caregiving to have had a detrimental effect on their health.11
For more information on family caregivers of older adults, see the supplement to the September issue of AJN, State of the Science: Professional Partners Supporting Family Caregivers, available online at http://www.nursingcenter.com/ajnfamilycaregivers.
Go to http://links.lww.com/A301 to watch a video demonstrating the use and interpretation of the Information for the Hospital Team About a Patient with Memory Problems form. Then see the health care team plan strategies for involving family members in hospital care.
View this video in its entirety and then apply for CE credit at http://www.nursingcenter.com/AJNolderadults; click on the How to Try This series link. All videos are free and in a downloadable format (not streaming video) that requires Windows Media Player.
Ideally, best-practice approaches begin before a person with dementia is hospitalized.
Family members of a hospitalized older adult with dementia should feel like part of the health care team and be involved in advance planning for the possibility of an ED visit or hospital stay. Their involvement includes addressing advance directives soon after a diagnosis of dementia is made, so that the patient can be included in decision making,31 as well as gaining an understanding of the patient's health care preferences in order to communicate them to the team.
Also, it's not uncommon for medications to be added or changed during a hospitalization. This is another area where family involvement is essential; people with dementia may not be able to comprehend and institute new regimens after discharge.31 And because communication between acute care staff and primary care providers can be disjointed,32, 33 the education of family members is critical: they may serve as liaisons between inpatient and outpatient settings.
For more information on this and other geriatrics assessment tools and best practices go to http://www.ConsultGeriRN.org, the clinical Web site of the Hartford Institute for Geriatric Nursing, New York University College of Nursing, and the Nurses Improving Care for Healthsystem Elders (NICHE) program. The site presents authoritative clinical products, resources, and continuing education opportunities that support individual nurses and practice settings.
Visit the Hartford Institute site, http://www.hartfordign.org, and the NICHE site, http://www.nicheprogram.org, for additional products and resources. Go to http://www.nursingcenter.com/AJNolderadults and click on the How to Try This link to access all articles and videos in this series.
Additional resources. The following are additional resources that can help nurses to assess caregiver strain and manage patients with dementia.
The Modified Caregiver Strain Index has been validated and found reliable for identifying long-term family caregivers who may benefit from additional assessment and follow-up. See "Helping Those Who Help Others," September, and go online to watch a free video in which nurses use the index with a patient: http://links.lww.com/A291.
The Scottish Intercollegiate Guidelines Network issued evidence-based recommendations for managing patients with dementia. "Management of Patients with Dementia: a National Clinical Guideline" includes sections on nonpharmacologic interventions and caregiver intervention programs. It's available online: http://www.sign.ac.uk/pdf/sign86.pdf.
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