Three dimensions of burden were found: effect on the social and personal life of caregivers, psychological burden and feelings of guilt. Some health variables were linked to these dimensions. Spouses and children perceived burden differently. Spouse caregivers emphasized the deterioration of their personal and social life. Children, less involved in daily care, were more prone to feel guilt that they were not doing enough for their parent.

BackgroundThe objective of this study was to assess the responsiveness of the Minimum Data Set Activities of Daily Living (MDS-ADL) Scale to change over time by examining the change in physical function in adults with moderate to severe dementia with no comorbid illness who had been resident in a nursing home for over 90 days.MethodsLongitudinal data were collected on nursing home residents with moderate (n = 7001) or severe (n = 4616) dementia in one US state from the US national Minimum Data Set (MDS). Severity of dementia was determined by the MDS Cognitive Performance Scale (CPS). Physical function was assessed by summing the seven items (bed mobility, transfer, locomotion, dressing, eating, toilet use, personal hygiene) on the MDS activities of daily living (ADL) Long Form scale. Mean change over time of MDS-ADL scores were estimated at three and six months for residents with moderate (CPS score of 3) and severe (CPS score of 4 or 5) dementia.ResultsPhysical function in residents with moderate cognitive impairment deteriorated over six months by an average of 1.78 points on the MDS-ADL Long Form scale, while those with severe cognitive impairment declined by an average of 1.70 points. Approximately one quarter of residents in both groups showed some improvement in physical function over the six month period. Residents with moderate cognitive impairment experienced the greatest deterioration in early-loss and mid-loss ADL items (personal hygiene, dressing, toilet use) and residents with severe cognitive impairment showed the greatest deterioration in activities related to eating, a late loss ADL.ConclusionThe MDS-ADL Long Form scale detected clinically meaningful change in physical function in a large cohort of long-stay nursing home residents with moderate to severe dementia, supporting its use as a research tool in future studies.

By showing the independent and combined effects of polypharmacy and frailty on mortality risk, this study should reinforce the awareness of clinicians with regard to these factors, rather prevalent in old people.