Post-Hospital Transitions for Individuals With Moderate to Severe Cognitive Impairment : Page 2 of 2

March 19, 2012

Patient and Caregiver Burdens

Because dementia is a terminal disease,2 exposing individuals with severe dementia to hospital services and other burdensome interventions that are unlikely to result in clinical improvement or reduce suffering (eg, feeding tube placement) should be avoided.4,56 Reports regarding end-of-life care in dementia suggest that orders such as “do not hospitalize” are uncommon, and the presence of such a directive is related to individual patient, regional, and institutional factors.57 Discussions regarding serious decisions, such as on feeding tube placement and do-not-hospitalize orders, can be undertaken during routine patient care and are important to educate the patient and his or her family caregivers so that an informed decision can be made.58

For some family members, grief and other symptoms similar to bereavement may begin before the patient dies.59 Family caregivers of an individual hospitalized for dementia are also at heightened risk for depression.60,61 In general, caregivers report worse health than noncaregivers, engage in fewer health-promoting behaviors, and have worse medication adherence.62-64 In 1999, Schulz and Beach65 reported a 63% higher mortality risk for stressed spousal caregivers. Further data regarding mortality risks suggest that caring for a hospitalized patient is an independent risk factor for spousal caregiver death; dementia caregivers have the highest risk, possibly related to poor self-care, the distress of facing dementia-related behavioral problems in their loved one, or worries about making end-of-life decisions.66-68 In these situations, attending to caregiver health concerns amid discussions of dementia treatment for the patient can be helpful.

The Transitions of Care Consensus Policy Statement and Recommendations

Broad recommendations regarding post-hospital transitions were defined during the 2007 Transitions of Care Consensus Conference (TOCCC) and subsequently published.69 The report, which draws on results from intervention studies and clinical expert opinion, supports continued development and dissemination of evidence-based practices. The policies described in the TOCCC report are designed to apply to the transition from inpatient medical treatment to outpatient care at home. Despite the focused nature of the guidelines, the general principles can be applied to other transitions, including those experienced by individuals with dementia or delirium undergoing discharge from medical and psychiatric hospitals to home, to a nursing home, or to an assisted living facility.

General recommendations from the TOCCC report are outlined in Table 3. The standard transition record, for any individual being discharged from a medical hospital, should be fully understandable by the patient or his or her caregiver and incorporate the listed items. The clinician
completing the transition record should clearly document his or her name and institutional affiliation; knowledge regarding the patient’s advance directives, if any; the patient’s capacity to understand information; and the status of any caregivers who are assisting the patient.69 Medical communities as well as hospital and healthcare institutions should consider adopting national standards similar to those recommended in the TOCCC report; tool kits to aid success are available through programs such as projects BOOST and RED.

Tailoring the Transition Record for Moderate to Severe Cognitive Impairment

Enhancements of standard elements of the transition record should be considered for individuals with moderate to severe dementia or for those who experienced delirium during hospitalization. In these situations, the transition record should clearly identify and provide contact information for any known family caregivers of the patient, including notation of which individuals are authorized to be surrogate decision-makers.70 There should be a stated determination as to what elements of the discharge instructions the patient can and cannot understand, along with an assessment of patient and caregiver resources and their capacity to adhere to the recommended discharge instructions.

If the patient is returning home and would benefit from aftercare in-home services, such as visiting nurse assistance, communication with this agency or individual should be noted in the transition record. If the hospital course included significant symptoms, such as acute disorientation, paranoia, or threatening behavior, or if there is a known history of such behavioral disturbances, then follow-up regarding both medical and mental health clinicians should be coordinated, with specific instructions for whom to contact if problems arise. Whenever possible, instructions regarding how to manage behavioral problems should be included, with particular
attention paid to any factors that might pose a safety risk to the patient or his or her caregivers.

If skilled short-term nursing home treatment is arranged, recommendations for eventual home care should be provided. Such instructions may benefit the nursing home clinicians at the time of transition. Similarly, if long-term residential nursing home care is planned after inpatient medical treatment, consider including all the aforementioned elements plus recommendations for nursing home staff regarding the psychosocial elements of care that might ease or hamper the patient’s comfort during the initial transition.24

Tailoring Strategies to Individual Patients and Settings

Several strategies for increasing the capacity of successful post-hospital transitions for vulnerable individuals with cognitive impairment are available to clinicians. Gains can be expected from simply increasing awareness of and reliance on the tool kits available through projects such as BOOST, RED, and CTI. Individual hospitals can develop staff education programs regarding the recognition and treatment of dementia and delirium; this education should be tailored to physicians, case managers, social workers, nurses, and other healthcare professionals. Hospitals or healthcare groups may choose to employ a new category of staff to function as a liaison between the hospital setting and the aftercare environment, such as the trained coach in the CTI or the transitional care nurse in Naylor’s Transitional Care Model (Table 4).3,17,71,72 Hospital administrators can also consider expanding the use of community visiting nurses to establish contact with these patients and their family caregivers in the hospital before discharge. These and other potential solutions will require continued empirical testing and validation of effectiveness.


When the medical or psychiatric inpatient treatment of an individual with dementia is completed, the next priority is the prevention of unnecessary rehospitalization. Financial costs of rehospitalization are high, and the burden patients and family caregivers experience when serial hospitalizations and multiple transitions of care occur is of great concern. Long-term goals could be achieved by improving aftercare service matching for individuals with cognitive impairment. Exactly how to effectively achieve such goals remains an important question; nevertheless, substantive steps have already been undertaken through the development of several of the projects outlined in this article, as well as publication of the TOCCC report, which makes evidence-based recommendations. Clinicians, hospitals, and caregivers can use these resources while they await the larger changes in policy and healthcare systems that are needed.


Dr. Epstein-Lubow acknowledges support from Butler Hospital, the American Federation for Aging Research, the John A. Hartford Foundation’s Center for Excellence in Geriatrics at Brown University, and the Surdna Foundation Fellowship Program at the Brown University Center for Gerontology and Healthcare Research. Dr. Fulton reports no relevant financial relationships.



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