Chair: Frøydis Bruvik & Joan Munin

Overview: The occurrence of dementia is increasing globally.  At the same time, older adults with dementia prefer to live at home for as long as possible, with most of the responsibility of care on family members.  Thus, it is becoming increasingly important to understand ways to make living at home safe for persons with dementia and less burdensome for caregivers. The objectives of this symposium are to describe the qualitative experiences of persons with dementia and their families about living at home and their support preferences and to identify practical and social factors that can improve supportive interventions for persons with dementia and their family caregivers.

S6.4.1 Living at home with dementia        

Stein Erik Fæø, Bettina Husebø, Frøydis Bruvik, Oscar Tranvåg

University of Bergen, Norway

Background: The coming decades will see a major increase in occurrence of dementia. This has led to a strong emphasis on safe care solutions for persons with dementia at home. This is in line with research suggesting that older persons wish to live at home as long as possible. However, there is little knowledge as to how persons with dementia experience being at home. Methods: Founded upon Gadamer’s hermeneutical methodology, qualitative interviews were conducted with twelve home-dwelling persons with dementia to explore their perspectives on living at home, now and in the future. Results: Living at home as long as possible was a significant value for all participants. However, they put differing emphasis on what aspects of the home was important. They described their living at home in terms of a creative process of continuously adapting to the changes of life. Further, living at home represented a fundamental way of being in the world for the participants. Conclusion: This study illuminates how living at home is a multifaceted process and way of being in the world. By viewing dementia as part of this process the participants was able to withhold their home as an existential fundament.

S6.4.2 Use of coercive health care in patients with dementia

Aashild Gjellestad¹, Oksholm, Frøydis Bruvik²

¹VID Specialized University, Norway, ² University of Bergen, Norway

Background: Providing health care to patients with dementia (PwD) that resist care is challenging and the legal interface between coercive- and voluntary health care and securing patient needs can be unclear. The Norwegian Patient and User Rights Act, Chapter 4a, considers it to be coercion when healthcare is given without the patient´s permission or the patient resists it. If coercive healthcare is used, the health professional responsible has to submit a decision document to the supervisory health authority in the county, the County Governor (CG). Methods: We are collecting the decisions documents of coercive health care for PwD living at home from 17 CGs. Results: (preliminary, N=43): 72% of the patients were women, (age 57-99), 79% had Dementia and 7% had both Dementia and Intellectual Disability. 18.6% lived alone, 18.6% with a spouse, and 55.8% in assisted living facilities. Coercive healthcare was used for; admission to institution (34.9%), nursing care (23.3 %), restricted from going out (18.6%) and use of prescription drugs (7%). The decision-maker was a general practitioner (62.8%) or a registered nurse (30.2%). An interdisciplinary team was involved in 88.4% of the cases. Trust building measures were described in > 90% of the documents. Conclusions: Knowledge about legal, ethical, and professional measures to secure patient rights of autonomy and healthcare is needed to improve care both from an individual and a systems point of view.    

S6.4.3 The effect of psychosocial support of home-dwelling persons with dementia and their carers

Frøydis Bruvik¹, Johannessen, Knut Engedal² 

¹ University of Bergen, Norway, ² Norwegian National Advisory Unit on Ageing and Health, Oslo University Hospital, Norway

Background: A three component psychosocial intervention with a duration of 18 months was conducted to improve benefits and reduce burden in home-dwelling persons with dementia (PwD) and their family carers. Methods: We included 230 home-dwelling PwD and the family carers. They were randomized to usual care or intervention. The intervention consisted of education and problem-solving therapy for the carers and group-meetings including education for the PwD.  Outcome measures were the Cornell Scale of Depression in Dementia, Instrumental and Personal Activity of Daily Living, Quality of life (QoL) and nursing home admission, measured in patients and the Geriatric Depression Scale, Relative Stress Scale, and QoL in carers. Also, in-depth interviews were conducted with 20 of the dyads and analysed with content analysis. Results: The change in scores between baseline -24 months did not differ in the intervention and control groups for any outcomes. The interviews revealed that carers had a positive experience with the intervention.  Conclusions: Even if no significant differences were found between usual care and the three component intervention, mixed methods and posthoc analysis may add important knowledge for future studies of supporting home-dwelling PwD and their family carers.

S6.4.4 Perceptions of suffering and compassion in dementia caregiving

Joan Monin

Yale School of Public Health, USA

Background: Worldwide, families provide the majority of care for persons with dementia (PwD) at home.  Although a great service to society, caregiving can be physically and emotionally demanding. Research on caregiver burden typically identifies patient disability and pragmatic care tasks as primary stressors. Method: We analyzed quantitative interview data from 58 PwD and their spousal caregivers additionally to data from 108 African American and Hispanic caregivers of PwD. The study included measures of self-reported and perceived suffering of PwD and caregivers’ psychological and physical health, partners’ attachment styles,compassionate love, and caregivers’ intrusive thoughts. Results: The study showed that PwD report greater suffering when both partners are insecurely attached and that PwDs’ and caregivers’ compassionate love influence each other and protect caregivers’ psychological health. Intrusive thoughts were found to mediate the association between caregivers’ perceptions of PwD suffering and caregiver depression. Conclusion: Caregiving interventions may be improved by focusing on enhancing emotional communication between PwD and caregivers when it is possible and helping to emotionally prepare caregivers when it is not possible. Do medically-supportive informal caregivers modify utilization and costs for persons with dementia with multiple chronic conditions?

S6.4.5 Do medically-supportive informal caregivers modify utilization and costs for persons with dementia with multiple chronic conditions?

Janet MacNeil Vroomen,Tai-Seale, Joan Monin, Leo-Summers, Allore  

Yale School of Medicine, USA

Background: Informal caregivers provide most of the care for persons with dementia (PwD) and are increasingly performing medically-supportive tasks. Yet only 14% have ever had any training, which may lead to inefficacies in time and suboptimal medical care. Most PwD have multiple chronic conditions; however, it is unclear how co-existing chronic conditions contribute to healthcare utilization and cost. We looked at multimorbid PwD with combinations of heart failure (HF) and Diabetes (DM) to assess annual number of emergency department (ED) visits, hospitalization and costs. We also examined whether medically-supportive informal caregivers (CGs) modified resource utilization. Methods: The National Health and Aging Trends Study (NHATS) is an ongoing nationally-representative sample of Medicare beneficiaries ?65 years of age in the US. We linked unique participant identifiers from NHATS with Medicare Fee-for-service claims data from 2011-2015 provided by NHATS 27. Results: Preliminary results found that multimorbid PwD with HF or in combination with DM increased the number of annual ED visits and hospitalizations compared to multimorbid PwD.  PwD with a CG had more annual visits to the ED and hospital compared to mutimorbid PwD. Heart failure with a CG increased the number of ED visits and hospitalizations.  HF and DM with/without a CG increased the mean number of annual ED visits +hospitalizations. Conclusion: This study found that PwD with HF alone or in combination with DM have higher mean numbers of annual emergency department visits and hospitalizations. Caregivers modify hospital health care utilization.