Dementia September 2016; 15 (5)
Table of Contents
“It makes me feel like myself”: Person-centered versus traditional visual arts activities for people with dementia
Pp. 15: 895-912,
Video data on people with dementia were collected during a person-centered and intergenerational arts activity program called Opening Minds through Art (OMA)
A subsample of the OMA participants were also video recorded during traditional visual arts activities (e.g. coloring books, scrapbooking).
Well-Being Observation Tool© was used to code the intensity and frequency of observed domains of well-being (i.e. social interest, engagement, and pleasure) and ill-being (i.e. disengagement, negative affect, sadness, and confusion).
Descriptive results indicate a high percentage of moderate or high intensities of well-being during OMA sessions with little to no ill-being.
OMA vs. traditional visual arts activities showed significantly higher intensity scores for OMA in the domain of engagement and pleasure, as well as significantly lower intensity scores for disengagement.
Redesigning acute care for cognitively impaired older adults: Optimizing health care services
Pp. 15: 913-930,
Redesigning care delivery systems sensitive to the influence of CI may reduce acute care utilization while improving care quality. To develop a foundation of fundamental needs for health care redesign, we conducted focus groups with inpatient and outpatient providers to identify barriers, facilitators, and suggestions for improvements in care delivery for patients with CI.
Professional care providers in dementia care in eight European countries; their training and involvement in early dementia stage and in home care
Pp. 15: 931-957,
Knowledge concerning professionals involved in dementia care throughout its trajectory is sparse; the focus has mainly been on nursing-home care and less on home care, diagnosis and treatment of the disease and its complications despite the fact that home care is the most prominent type of care.
The aim of this study was to explore and describe professional care providers - investigate practice in the RightTimePlaceCare-countries with regard to screening, diagnostic procedures and treatment of dementia and home care.
End of life care: The experiences of advance care planning amongst family caregivers of people with advanced dementia – A qualitative study
Pp. 15: 958-975,
Aim To explore the experiences of advance care planning amongst family caregivers of people with advanced dementia.
Results/Findings Family caregivers need encouragement to ask the right questions during advance care planning to discuss the appropriateness of nursing and medical interventions at the end of life.
Conclusions Advance care planning can be facilitated with the family caregiver in the context of everyday practice within the nursing home environment for older people with dementia.
Therapeutic use of dolls for people living with dementia: A critical review of the literature
Pp. 15: 976-1001,
Aim To undertake a critical review of the published literature on doll therapy, using the Critical Appraisal Skills Programme Checklist (CASP) tool, in order to determine the potential benefits and challenges of this therapy for people living with dementia.
Conclusions Despite many commentaries and anecdotal accounts of the practice, this review identified only 11 empirical studies that were eligible. The majority of studies found that the use of dolls could be therapeutic for some people living with dementia by reporting increased levels of engagement, communication and reduction in episodes of distress. Some studies identified limitations to the therapy including; confusion over the ownership of the doll and healthcare professional uncertainty about issues pertaining to autonomy.
Inter-professional perspectives of dementia services and care in England: Outcomes of a focus group study
Pp. 15: 1002-1020,
Many people living with dementia are supported at home using a variety of health and social care services.
Respondents identified problems with information sharing and incompatible electronic systems; inflexibility in home care services; and poor recognition of dementia in hospital settings.
Key areas suggested by staff for improvements in dementia care included the implementation of more flexible services, dementia training for health and social care staff, and better quality care in acute hospital settings.
Experience of media presentations for the alleviation of agitation and emotional distress among dementia patients in a long-term nursing facility
Pp. 15: 1021-1033,
… it is clear that environmental factors can offer relief of cognitive impairment and encourage emotional stability. The purpose was to explore dementia patients’ experiences of a media presentation including images of nature.
The experience of natural scenes in dementia patients’ everyday atmosphere became a new and positive aspect of life at the long-term nursing facility,
This treatment could provide dementia patients with a nurturing relationship, making nature a supportive part of their everyday experience.
‘Talking about my experiences … at times disturbing yet positive’: Producing narratives with people living with dementia
Pp. 15: 1034-1052,
Conclusions Producing a narrative is a valuable and engaging experience for people with dementia and carers, and is likely to contribute to the quality of dementia care. Further research is needed to establish how narrative production could be incorporated into routine practice.
‘I wish they would remember that I forget:’ The effects of memory loss on the lives of individuals with mild-to-moderate dementia
Pp. 15: 1053-1067,
Purpose of study Due to changing cognitive and functional capabilities, individuals with dementia face challenging care-related issues such as feelings of embarrassment, relationship strain, and symptoms of depression and anxiety. Limited research exists examining individuals with dementia's perceptions and concerns about these issues and how their perspectives can impact the quality and process of their illness experience.
Results Individuals with dementia commented on a wide range of issues involving their memory loss, including negative emotional impacts, future concerns and illness progression, forgetting, loss of independence, and the negative and positive influences on interpersonal relationships. **Across questions, many individuals also stated that their memory loss did not significantly impact their lives.
Implications Discussion highlights how these findings can be used to expand our understanding of individuals with dementia's illness experience and to develop efficacious interventions for addressing negative aspects of living with memory loss while supporting positive aspects.
A revised interview for deterioration in daily living activities in dementia reveals the relationship between social activities and well-being
Pp. 15: 1068-1081,
Background: This study investigated instrumental activities of daily living deficits in mild dementia by exploring the relationship between instrumental activities of daily living initiative and performance and general cognition, people with dementia quality of life and carer stress.
Conclusions: This study shows that people with mild dementia are impaired to different degrees on their initiative and performance of instrumental activities of daily livings and that impairments relating to social activities particularly relate to well-being..
Couples' experiences with early-onset dementia: An interpretative phenomenological analysis of dyadic dynamics
Pp. 15: 1082-1099,
Objective The growing interest in early-onset dementia has attracted attention to the situation and experiences of the caregiver, most often the spouse.
Several qualitative studies on caregiving spouses have underlined the importance of the feeling of loss, the change of role reported by the caregiving spouses, and the strategies used to protect the person with dementia, all of which raise the question of the relational dynamics at play in these dyads.
Results … showing that control over symptoms gradually leads to deterioration of marital interactions and to the components of marital dissolution.
The dement in the community: Social work practice with people with dementia revisited
Pp. 15: 1100-1111,
While social work practice with people with dementia and their families… is an emerging area of specialism.
The increased incidence, prevalence and recognition of dementia suggest that this area of practice will expand and so learning from previous practice may offer helpful insights.
Carers: The navigators of the maze of care for people with dementia—A qualitative study
Pp. 15: 1112-1123,
1. Maggie Jamieson, Public Health, University of Canberra, Locked Bag 1, Canberra ACT 2601, Australia. Email: Maggie.email@example.com
1. Subacute and Aged Nursing Griffith University, Griffith, Australia; Gold Coast Hospital and Health Services, Southport, Australia
1. Jo-Ann Brown
1. Brian Draper
Background Dementia is a challenge in our society, with individuals accessing services across multiple settings. Carers are navigating and delivering care services in the home. This research sought to investigate the experiences of people with dementia and their carers when transitioning home from hospital.
Results During the hospital stay carers experienced a paradox: being required to deliver care yet perceiving that they were being ignored in regard to decisions about care. The time in hospital was considered by some carers to be stressful, as they were concerned about the safety of the person with dementia. Many reported that discharge home was rarely planned and coordinated. Returning home carers found re-establishing and/or accessing new services challenging, with available services often inappropriate to need.
Conclusion The paradox of the care experience in the acute setting, whereby the carer was either invited, or sought, to deliver care, yet was excluded in staff decisions about that care, challenges the current communication and coordination of care. For people with dementia and their carers, there is a need for a coordinated seamless service that enables continued unbroken care and support from acute care to home. Carers also need support navigating the wide range of services available and importantly both carers and care providers may need to understand service boundaries.
Recommendations This study highlights the need to acknowledge the expertise of the carer, and their need for support. Enabling a smooth discharge from hospital and support to navigate care access in the community is paramount. These experiences provide insight into gaps in service provision and modifying existing services may lead to improved experiences.
Being a pedestrian with dementia: A qualitative study using photo documentation and focus group interviews
Pp. 15: 1124-1140
The aim of the study was to identify problematic situations in using zebra crossings. They were identified from photo documentations comprising film sequences and the perspectives of people with dementia. The aim was also to identify how they would understand, interpret and act in these problematic situations based on their previous experiences and linked to the film sequences.
The first category, adding layers of problematic traffic situations to each other, was characterized by the informants’ creation of a problematic situation as a whole.
The different layers were described in the subcategories of layout of streets and zebra crossings, weather conditions, vehicles and crowding of pedestrians. The second category, actions used to meet different layers of problematic traffic situations, was characterized by avoiding problematic situations, using traffic lights as reminders and security precautions, following the flow at the zebra crossing and being cautious pedestrians.
In conclusion, as community-dwelling people with dementia commonly are pedestrians, it is important that health care professionals and caregivers take their experiences and management of problematic traffic situations into account when providing support.
Shared decision-making in dementia: A review of patient and family carer involvement
Pp. 15: 1141-1157,
Studies concerning the determinants of shared decision-making mostly focused on non-modifiable factors. Future research is needed to better promote shared decision-making among persons with dementia and their family carers.
Person-centred dementia care: a reality check in two nursing homes in Ireland
Pp. 15: 1158-1170,
The introduction of a person-centred care approach to dementia care has been a major paradigmatic shift in the care provision in residential settings for older adults in Ireland. However, policy implementation in nursing homes relies very much on the preparedness of nursing staff.
Notwithstanding this, carers’ perspectives on ‘good care’ for people with dementia included elements of PCC which suggested its ‘implicit’ use in practice. Besides the necessity of more (and more explicit) training on PCC, the findings also suggest concerns around communication between staff and management and the need for improvement of staffing resources and available time in residential settings in order to make the delivery of person-centred dementia care a reality
- borrow the DVD - available to members of Alzheimer’s Australia NSW by emailing NSW.Library@alzheimers.org.auThe voices of Iris: Cinematic representations of the aged woman and Alzheimer’s disease in Iris (2001)
Pp. 15: 1171-1183
Audiences must be critical of film representations of the aged woman living with Alzheimer’s disease and of dangerous reinscriptions of stereotypical equations about ageing as deterioration. This paper analyses the representation and decline of the aged woman through the different voices of Iris Murdoch in Richard Eyre’s film Iris (2001). Key vocal scenes are considered: On-screen encounters between young and aged Iris, vocal representations of dementia symptoms and silencing Iris as her disease progresses. Further, Iris’ recurrent unaccompanied song, “The Lark in the Clear Air,” compels audiences to “see” Iris with their ears more than with their eyes, exemplifying the representational power of sound in film. This paper is an appeal for increased debate about sonic representations of aged women, ageing and Alzheimer’s disease and dementia in film. The significance of audiences’ critical awareness and understanding about the social implications of these representations is discussed.
Conditions, components and outcomes of Integrative Validation Therapy in a long-term care facility for people with dementia. A qualitative evaluation study
Pp. 15: 1184-1204,
In this study, the practical application of Integrative Validation Therapy in a nursing home for people with dementia was investigated and evaluated from the perspectives of professionals and relatives by using Fourth Generation Evaluation - a complex intervention frequently applied in Germany’s long-term care settings, is a modification of Feil’s Validation Therapy and contains a specific attitude and several components of action. The findings demonstrate that professionals as well as relatives of nursing home residents gave the intervention a positive rating. From the perspective of the participating professionals, the application of IVA results in less agitated residents which also has an influence on the consumption of benzodiazepine and neuroleptics. …Another conclusion is that IVA supports person-centred care because, with IVA, professionals react to typical needs people with dementia have: comfort, inclusion, attachment and identity (Kitwood, 2012).
Changes in communication of Deaf people with dementia: A thematic interview with a close family member
Pp. 15: 1205-1218,
Background and aim Learning about changes in communication of Deaf with dementia (DWD) is important in order to improve services and support DWD and their families. We explored family members’ views on the changes in communication DWD have and the ways communication was adapted due to progression of dementia.
Results With decreasing vocabulary and increasing sign-finding difficulties, conversations became poorer, and DWD tended to diverge from the topic. Nonverbal communication became more important as the verbal communication abilities of DWD deteriorated, and the adult children took a more active role by taking initiative and guiding conversations.
Conclusion DWD seem to go through similar changes in communication as hearing people with dementia. Adult children of DWD need to get used to interpreting and assisting their parent’s communication through different phases of dementia.
Improving the care of older persons in Australian prisons using the Policy Delphi method
Pp. 15: 1219-1233,
1. Justice Health & Forensic Mental Health Network, Practice Development Unit, Malabar, New South Wales, Australia
1. Justice Health & Forensic Mental Health Network, Practice Development Unit, Malabar, New South Wales, Australia
1. Claire Newman, Justice Health & Forensic Mental Health Network, Practice Development Unit, The Roundhouse, Long Bay Complex, 1300 Anzac Parade, Malabar, New South Wales 2036, Australia. Email: Claire.firstname.lastname@example.org
1. Justice Health & Forensic Mental Health Network, Long Bay Hospital, Malabar, New South Wales, Australia
There are currently no internationally recognised and approved processes relating to the care of older persons with dementia in prison. This research aimed to develop tools and procedures related to managing the care of, including the identification and assessment of, older persons with dementia who are imprisoned in New South Wales, Australia. A modified approach to the Policy Delphi method, using both surveys and facilitated discussion groups, enabled experts to come together to discuss improving the quality of care provision for older persons with dementia in prison and achieve research aims.
The experience of family carers of people with dementia who are hospitalised
Pp. 15: 1234-1245
Hospital admission of a person with dementia can have a significant impact on the family carer, who temporarily relinquishes caring to health professionals.
Adjusting to the change in the carer’s role can be challenging and result in feelings of helplessness, loneliness, loss of control and being undervalued.
Family support can assist with the transition but family conflict increases anxiety.
Good communication between clinicians and the carer is vital.
The carer should be included in decision-making as the ‘expert' in the care of the person with dementia. This article discusses findings of a larger study specifically related to the emotional support required for the carers of people with dementia, who are admitted to hospital. The carer and the patient must be considered as a dyad in relation to discharge planning.
Knowingly not wanting to know: Discourses of people diagnosed with mild cognitive impairment
Pp. 15: 1246-1259,
Mild cognitive impairment is a heterogeneous clinical state whereby assessed cognitive changes over time may progress to dementia, remain stable or revert to back to normal.
This study aimed to identify, through discourse analysis, how people with a diagnosis of mild cognitive impairment used language in order to reveal the societal views and shared meanings of the diagnosis, and the positions taken by people.
Furthermore, in the absence of a coherent discourse related to mild cognitive impairment, participants went on to position themselves between two more familiar discourse; ‘Knowing’ about ageing and dying and ‘Not Wanting to Know’ about dementia. Clinicians must consider how information is presented to people about mild cognitive impairment, including where mild cognitive impairment is positioned in respect to normal ageing and dementia.
Qualitative assessment of self-identity in people with advanced dementia
Pp. 15: 1260-1278,
This study aimed to understand the preserved elements of self-identity in persons with moderate to severe dementia attributable to Alzheimer's disease
The participants with dementia showed evidence of self-reference even though losses in explicit memory were evident.
Nonetheless, all participants showed understanding of their role in relationships and exhibited concrete preferences. Our findings suggest that memory loss and other cognitive deficits associated with moderate to severe dementia do not necessarily lead to a loss of “self.”
Discovering the dementia evidence base: Tools to support knowledge to action in dementia care (innovative practice)
Pp. 15: 1279-1288,
Dementia requires expert care and decision making, based on sound evidence. Reliable evidence is difficult for busy dementia care professionals to find quickly. This study developed an experimentally tested search filter as an innovative tool to retrieve literature on dementia. It has a known retrieval performance and can be provided as an open access web link directly to current literature. The Dementia Search Filter was developed using validated methodology. An Expert Advisory Group of dementia care practitioners and researchers ratified a representative set of relevant studies and undertook post hoc relevance assessment, to ensure the usefulness of the search filter. The Dementia Search Filter is published on two websites and combined with expert searches to link to evidence on dementia, at end of life in aged care settings and more generally. Evidence accessed by the Dementia Search Filter will help overcome barriers to finding current relevant research in the field, for practitioners, researchers and decision makers.
Catch a Glimpse of Me: The development of staff videos to promote person-centered care
Pp. 15: 1289-1294,
Catch a Glimpse of Me is an ongoing project that uses video to help staff deliver more person-centered care for people with dementia living in long-term care. Focus groups consisting of residents, family and staff members were conducted to develop a template for the development of the videos. The five themes they identified as being important to include are: family; interests and hobbies; memories and moments; life space and getting personal. The article describes the process of developing the videos and discusses the ongoing potential of the Catch a Glimpse of Me project.
Mark Making: Methodologies and methods (innovative practice)
Pp. 15: 1295-1305,
Mark Making is a recently completed review exploring the role of the participative arts for people with dementia in the UK. Key concerns underlying Mark Making were both how to privilege the views and feelings of people with a dementia and also how best to understand the value of the arts for people with a dementia.
These issues were tackled using a variety of qualitative methods. Methods included a rigorous literature review, the development of a unique web-based map locating many participative arts projects and above all working with people with a dementia to ascertain their views. This brief article will concentrate on some of the innovative methods that the Mark Making team used, with particular reference to comics as a mode of engagement as used in the Descartes project. The article will provide an insight into some of the methodological challenges confronted by Mark Making as well as the inspirations and successes that were enjoyed.
The role of Dementia Champion in dementia care: Its aspirations, development and training needs (innovative practice)
Pp. 15: 1306-1312
Background The conceptualisation and development of the role of Dementia Champions in clinical practice is ongoing, and dementia specific training has a significant impact on the scope of the role.
Findings Of 188, 34 Dementia Champions (response rate 18%) participated. Most perceived dementia awareness training as useful, but limited. Areas suggested for further development were context specific skills training, education programmes that were formally recognised, and clarification around the expectations of the role.
Conclusion Expectations of ‘champion roles’ in dementia need to be re-visited, specifically in relation to the remit of the role and the level of education, preparation and support required for Dementia Champions to become change agents in dementia care.