a Alzheimer Centrum Limburg , Maastricht University , Maastricht , The Netherlands.
b Bangor University , Bangor , UK.
Aging Ment Health. 2018 Jul;22(7):897-902. doi: 10.1080/13607863.2017.1390732. Epub 2017 Oct 25.
The Actifcare (Access to timely formal care) study investigated needs of people with dementia and their families during the phase in which formal care is being considered, and examined whether higher need levels are related to lower quality of life (QOL).
From eight European countries 451 people with dementia and their carers participated. Needs were measured with the Camberwell Assessment of Need for the Elderly. QOL was measured with the QOL-AD, and carer quality of life was measured with the CarerQol. The relationship between needs and QOL was analysed with multiple regression analyses.
Needs were expressed in the domains of psychological distress, daytime activities, company and information. People with dementia rated their unmet needs significantly lower than their carers: the mean number of self-rated unmet needs was 0.95, whereas the mean proxy ratings were 1.66. For met needs, the self-rated mean was 5.5 and was 8 when proxy-rated. The level of needs reported was negatively associated with QOL for both.
The study results show that informal carers reported almost twice as many needs as people with dementia. The domains in which needs are expressed should be the primary focus for interventions to support QOL. The perspectives of people with dementia are informative when identifying needs.
Actifcare（及时获得正规护理）研究调查了痴呆症患者及其家属在考虑正规护理阶段的需求，并探讨了较高的需求水平是否与较低的生活质量（QOL）有关。
来自八个欧洲国家的 451 名痴呆症患者及其护理人员参与了研究。需求通过老年坎伯韦尔需求评估进行测量。QOL 通过 QOL-AD 进行测量，护理人员的生活质量通过 CarerQol 进行测量。使用多元回归分析分析了需求与 QOL 之间的关系。
需求在心理困扰、日间活动、陪伴和信息领域得到表达。痴呆症患者自评的未满足需求明显低于其护理人员：自评的未满足需求平均值为 0.95，而代理评估的平均值为 1.66。对于满足的需求，自评分均值为 5.5，代理评分均值为 8。报告的需求水平与 QOL 呈负相关。
研究结果表明，非正式护理人员报告的需求几乎是痴呆症患者的两倍。表达需求的领域应成为支持 QOL 的干预措施的主要重点。当确定需求时，患者的观点具有信息性。
