Basket | Login


P24. Community and home care

Detailed programme and abstracts

P24. Community and home care (Wednesday 2 Nov., 10.30 - 12.00)

P24.1. Mixed-method evaluation of a intervention aimed at improving social participation of community dwelling older people with dementia and their caregivers


Introduction: The promotion of social participation, a dimension of social health, is a prerequisite for good psychosocial care. The goal of this study was to evaluate a tailor-made, person-centered and interdisciplinary intervention (the Social Fitness Program) aimed at improving the participation of community dwelling older people with dementia and their caregivers (dyads) in meaningful social activities.

Method: We applied mixed-methods to evaluate this randomized pilot test (n=17 dyads; n=8 dyads in the control group and n= 9 dyads in the intervention group) with regard to possible effectiveness and process of implementation. Possible effectiveness was primary measured using the Canadian Occupational Performance Measure (COPM).  The process of implementation was evaluated through qualitative research methods including interviews with non-participants and participating dyads, interviews and focus groups with professionals.

Results: This study gives us insight in: the reasons of dyads who experience declined social participation for not participating in the study; reasons for participating dyads to participate in the study; the factors (positive and negative) influencing the study recruitment process according to healthcare and welfare professionals; healthcare and welfare professionals’ experiences with care delivery during the social fitness study; and dyads’ experiences with intervention delivery.

Conclusion: We will present the qualitative and quantitative results from this pilot, and we will provide practical recommendations healthcare and welfare professionals can apply to improve social participation of people with dementia and their caregivers. This study provides professionals within the field of dementia care with valuable information regarding the promotion of social participation.

P24.2. Wives perspectives of managing mouth care at home

CRONIN Camille, PURCELL Phoebe, CANNELL Phillip

Background: Dental disease, despite being preventable remains a major public health problem globally (ICOHIRP 2015). Dementia in the UK estimated at 850,000 people and expected to double in the next 30 years (Alzheimer’s Society 2016). The cost of dementia to society is more than cancer, heart disease and stroke (DH 2015). Noble et al’s (2013) review of patients with cognitive impairment had increased risk of oral health problems than their older counterparts’ not suffering dementia.

Methods: A series of focus groups were conducted with ladies attending a dementia support group. They were all married and living with husbands who have dementia. They were approached to gain views and experiences of mouth care to inform a larger proposed study on oral health in dementia care settings. They discussed how they managed mouth care routines with their partners, barriers and challenges maintaining oral health.

Results: Sixteen wives participated in the focus groups discussing how they managed mouth care routines at home. Managing at home with someone living with dementia can be challenging and maintaining a routine like brushing teeth can be very hard. Through verification and content analysis some strong themes were identified: the disease, they described brushing teeth as a “bullying process”, living with dementia was “all about them” (their husbands), and when using services like the dentist “you have to explain he has dementia each time”. Despite this dental visits were perceived as important and they identified barriers and challenges that included dementia, refusal of mouth care, and lack of understanding with dental services.

Conclusions: Guidance and support for mouth care is needed at home. Dental services need to adapt to an increasingly older population through the use of greater skill mix in dental teams, creating dementia friendly environments and need to explore new ways of commissioning dental care services.

P24.3. The role of the home environment in dementia care and support: systematic review of qualitative research


Background: The domestic home is an important site for care provision for people with dementia and their families. This systematic review synthesised qualitative studies to explore the role of the home environment and identify potential barriers and facilitators in home dementia care and support in order to inform future practice and research.

Methods: A systematic search in 12 databases identified international qualitative literature on perceptions and experiences of community-dwelling people with dementia, family and formal carers regarding the role of the home environment and ways to tackle daily challenges.

Results: Forty qualitative studies representing nine countries, 653 informal carers, 372 people with dementia and 120 professionals were included and analysed using thematic synthesis. The main three themes were: “home as a paradox”, “there is no magic formula”, and “adapting the physical space, objects and behaviour”.

Conclusions: The home environment is an important setting for care and needs to remain flexible to accommodate changes and challenges. Family carers and people with dementia implement, and often improvise, various environmental strategies. Continuous and tailor-made support at home is required to maintain people’s independence and deliver home-based solutions that promote dementia-friendly communities.

P24.4. Integrated care in the community: sharing evaluation from testing the 8 pillar model


Focus on Dementia Programme is a partnership between Healthcare Improvement Scotland, Scottish Government and Alzheimer Scotland.

For the last 2 years we have been testing a model of integrated care in the community for people with moderate to severe dementia (Alzheimer Scotland 8 pillar model).  The testing period has now come to an end (August 2016) and we now have the results of external evaluation which we would like to share to inform wider learning.

The 8 pillar model has been produced by Alzheimer Scotland alongside people with dementia and their carers and health and social care staff.  The model proposes a comprehensive integrated and coordinated approach to supporting people with dementia and their families and carers.  This includes the introduction of a dementia practice co-ordinator function who will ensure access to all pillars of support on an ongoing basis as appropriate to each individual. Other pillars include support for carers, personalised support, community connections, environment, mental health care and treatment, general health care and treatment and therapeutic interventions.

People with dementia and their carers do not always receive the range of health and social care interventions required to build their resilience and support them to live in the community. Within this session we will discuss resilience and how the 8 pillar model is supporting people with dementia to live well for as long as possible in the community. We will discuss the improvement collaborative approach we have developed to support 5 health and social care partnerships in Scotland (rural and urban areas). Test sites are multidisciplinary teams working alongside people with dementia and their families and carers. 

This work takes a therapeutic approach to enhancing the resilience of people with dementia and their families and carer. The results will inform the National Dementia Strategy for Scotland in 2016.

P24.5. Dementia patient navigation model: connecting the clinic, the community, and the home


Those affected by Alzheimer’s disease are searching for guidance both within the healthcare system and outside it. People with dementia and caregivers often struggle to manage the very complex systems of treatment and care, and they are often left confused, misled, and able only to obtain inconsistent care.

We propose for consideration an Alzheimer’s Patient Navigation Model. Patient Navigation was pioneered for oncology treatment by Dr. Harold Freeman, as a practical, patient-centered, and scalable aid for people facing a complex medical system. We believe this concept can be applied to dementia.

An Alzheimer’s Patient Navigation Model trains Patient Navigators help to facilitate planning, communication, and expectations related to treatment and care. The Model helps those affected by dementia to overcome high levels of stigma, to recognize the importance of early diagnosis, to manage the complex care needs, and to overcome the disproportionate impact on marginalized populations.

Patient Navigators are trained to help to start conversations about dementia early on, to ensure that physician visits are productive, to communicate all available options to those with Alzheimer’s and their caregivers, to provide access to curated information, to manage treatment expectations, and to provide care for the caregiver.

We believe the Patient Navigation Model is a realistic and scalable solution. In oncology, the Model has proven to decrease the cost of care and reduce hospitalizations and skilled nursing facility placements. We believe a pilot program in Alzheimer’s could prove equally successful.

We anticipate six steps to launch: identifying and training Patient Navigators, securing funding, developing best practices, launching pilot programs, embedding the model in quality measures work, and linking to other innovative programs.

Given its proven advantages, potential value, and straightforward implementation, the Alzheimer’s Patient Navigation Model could be a critical strategy to help people with dementia and caregivers to plan, coordinate, and manage dementia care.

P24.6. Assessing the stability of home-based care arrangements for people with dementia – a concept far too complex for a single binary item

von KUTZLEBEN Milena, HOLLE Bernhard

Background: The majority of people with dementia (PwD) live at home. In most cases informal carers are the key care providers.

The objective of this study was i. a. to identify factors associated with perceived stability of these care arrangements and to reconstruct typical trajectories of informal caring.

Methods: A mixed-methods design using a questionnaire for informal carers as a cross-sectional survey (stability was operationalized as 'the perceived ability of the informal carer to keep the PwD at home, even if the dementia progresses') and qualitative guided interviews. Non-parametric regression procedures were used to analyze variables associated with stability. Qualitative data was analyzed following the methodological principals of objective hermeneutics.

Results: The vast majority (87.4 %) of participants (n=102) stated that they would be able to keep the PwD at home even when dementia progresses, with some additional support if necessary. PwDs country of origin and sex of the PwD were significantly associated with perceived stability. When proxy answers of 17 formal carers were taken into account, the care level of the PwD showed the strongest association.

Qualitative analysis (n=8) revealed that informal caring is a sequential process that undergoes certain phases. ‘Maintaining stability’ was identified to be an underlying theme in the informal caring trajectory.

Conclusion: Stability of care arrangements can be assumed to be associated with a conglomeration of variables. Moreover, the perception of stability is a subjective issue and may vary between informal and formal carers. Qualitative results revealed the complexity of the phenomenon and point to the need to think beyond binarity (is the arrangement stable yes or no?). In order to develop innovative approaches to asses and promote the stability of care arrangements it will be essential to further conceptualize and define stability of home-based care arrangements on a theoretical and empirical basis.



Last Updated: Tuesday 10 January 2017


  • Acknowledgements

    The 26th AE Conference in Copenhagen received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimerforeningen gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche