Caregiver Preference for Tube Feeding in Community-Dwelling Persons with Severe Dementia.

BACKGROUND

Evidence suggests that tube feeding persons with severe dementia (PWSDs) does not improve survival or quality of life, yet many continue to be tube fed. Reasons why caregivers choose to do so are not entirely understood.

OBJECTIVE

To understand what shapes caregiver preference toward nasogastric (NG) tube feeding for community-dwelling PWSDs.

DESIGN

A qualitative study that employed semistructured interviews.

SETTING AND SUBJECTS

Primary informal caregivers of community-dwelling persons diagnosed with dementia Functional Assessment Staging Test (FAST) stage 7 in Singapore.

METHODS

Caregivers participated in qualitative in-depth interviews during which their preferences toward NG tube feeding of PWSDs were explored. We used principles of reflexive thematic analysis to compare caregivers who expressed a preference for NG tube feeding with those who did not prefer it.

RESULTS

We interviewed 27 caregivers of PWSDs. Most caregivers, 67% (n = 18), expressed a preference for tube feeding. We conceptualized four main themes describing what shapes caregiver preference toward NG tube feeding: (1) willingness to use tube feeding to prolong life at the expense of suffering, (2) deference to healthcare provider's (HCP's) recommendation, (3) caregiver knowledge of alternatives to tube feeding, and (4) caregivers' internal and external conflicts.

CONCLUSION

Results from this study highlight the need for new inclusive approaches to shared decision-making between HCPs and caregivers regarding tube feeding for community-dwelling PWSDs. J Am Geriatr Soc 68:2264-2269, 2020.