Jordan, Alice, Regnard, Claud, O'Brien, John T, Hughes, Julian C.

Objective: There is a concern that pain is under-recognized in dementia. However, there may be other causes of distress. We wished to evaluate the utility of a distress tool and a pain tool.; Methods: Nursing home residents with advanced dementia were observed using pain (Pain Assessment in Advanced Dementia scale (PAINAD)) and distress (Disability Distress […]

Sampson, Elizabeth L., Jones, Louise, Thuné-Boyle, Ingela C. V., Kukkastenvehmas, Riitta, King, Michael, Leurent, Baptiste, Tookman, Adrian, Blanchard, Martin R.

Patients with advanced dementia often receive poor end-of-life care. We aimed to design and pilot a palliative care and advance care plan (ACP) intervention. Patients had undergone emergency hospital admission and had severe dementia. The intervention consisted of a palliative care patient assessment which informed an ACP discussion with the carer, who was offered the […]

Kiely, Dan K., Givens, Jane L., Shaffer, Michele L., Teno, Joan M., Mitchell, Susan L.

Objectives: To identify characteristics of nursing home (NH) residents with advanced dementia and their healthcare proxies (HCPs) associated with hospice referral and to examine the association between hospice use and the treatment of pain and dyspnea and unmet needs during the last 7 days of life.; Design: Prospective cohort study.; Setting: Twenty-two Boston-area NHs.; Participants: […]

Cordner, Zachary, Blass, David M., Rabins, Peter V., Black, Betty S.

Objectives: To examine quality of life (QOL) in nursing home (NH) residents with advanced dementia and identify correlates of QOL near the end of life.; Design: Cross-sectional data derived from NH records, interviews with residents’ surrogate decision-makers, QOL ratings by NH caregivers, and assessment of residents’ cognitive function.; Setting: Three NHs in Maryland.; Participants: A […]

van der Steen, Jenny T., van Soest-Poortvliet, Mirjam C., Gijsberts, Marie-José H. E., Onwuteaka-Philipsen, Bregje D., Achterberg, Wilco P., Ribbe, Miel W., Deliens, Luc, de Vet, Henrica C. W.

Objective: To analyse possible trends in families’ evaluations of the quality of end-of-life care and the quality of dying in dementia.; Design: Analysis of individual patient data from 3 studies (2 solely retrospective (after death) and 1 partly prospective).; Method: We combined data on 372 residents with dementia from 38 nursing homes and 13 residential […]

Teno, Joan M., Mitchell, Susan L., Kuo, Sylvia K., Gozalo, Pedro L., Rhodes, Ramona L., Lima, Julie C., Mor, Vincent

Objectives: To examine family member’s perceptions of decision-making and outcomes of feeding tubes.; Design: Mortality follow-back survey. Sample weights were used to account for oversampling and survey design. A multivariate model examined the association between feeding tube use and overall quality of care rating regarding the last week of life.; Setting: Nursing homes, hospitals, and […]

Reinhardt, Joann P., Chichin, Eileen, Posner, Laurie, Kassabian, Simon

Family members of persons with advanced dementia may be asked to make complex treatment decisions without having adequate knowledge regarding the risks and benefits. This 6-month, prospective, randomized trial tested the effect of an intervention consisting of a face-to-face, structured conversation about end-of-life care options with family members of nursing home residents with advanced dementia. […]

Ikegami, Naoki, Ikezaki, Sumie

Objectives: To describe end-of-life care in Japanese nursing homes by comparing facility and characteristics of residents dying in nursing homes with those who had been transferred and had died in hospitals, and by comparing the quality of end-of-life care with hospitals and with their respective counterparts in the United States.; Setting: National sample of 653 […]