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PO4. Innovation

Detailed programme, abstracts and presentations

PO4.2. How much are support services worth? The case of Informal caregivers of care recipients with Alzheimer’s Disease in ICS-HIS French panel data

Gerves Chloé, Bellanger Martine, Ankri Joël

Objectives: Support and services to informal caregivers have been shown to alleviate caregiver’s burden of caring and to be cost-effective.  This work reports a research carried out in France, which aimed to assess the relationships between caregiver’s willingness to pay (WTP) to be replaced and their needs for support and services.

Data & Methods: The data used stemmed from two representative national surveys conducted by the French National Institute of Statistics (INSEE) in association with the French Ministry of Health in 2008: the Informal Caregivers Survey (ICS) and the Health and Impairment Survey (HIS). Contingent valuation method was used to approximate the monetary value of informal care. After forgoing observations with missing values, we ran our model on 193 informal caregivers of people with Alzheimer’s disease. Statistical analyses were performed using Heckman’s two-step estimation strategy.

Results: Informal caregiver’s WTP is influenced by the need for care training (p<0.01). Caregiver’s health conditions related to care such as depression and anxiety disorders also affected their WTP (p<0.05). Providing day and night supervision to care recipient (p<0.01) and caregiver’s income also affected their WTP (p<0.05). Sensitivity analysis qualified these results for gender and age.  gradients.

Discussion: Public investment for supporting caregivers in different ways is required to implement efficient policies since decision makers rely more and more on informal care as the most important source of care for Alzheimer’s disease patients.

PO4.3. Cognitive Assistance to Support Social Integration In Alzheimer’s Disease

Koldrack Philipp, Luplow Maik, Kirste Thomas, Teipel Stefan

An active lifestyle with extensive social contact protects cognition of elderly people and is substantial for quality of life. Communication and social interaction reduces the cognitive decline and delays progression of neurodegenerative disease like Alzheimer’s disease (AD).  However, maintaining social contact proves to be increasingly difficult with growing cognitive impairment, and bears the risk of growing social exclusion. Orthotics for cognitive functions can support people with AD in processing information and may help to overcome every day limitations. While each available system targets a specific class of cognitive task, we argue for the special value of assistive technology supporting outdoor mobility to create baseline requirements to enable communication and social interaction.

Employing application examples for existing technical solutions and systems described in the scientific literature, we outline the necessary trade-off in system design between the needs for security on the one hand and the desire for autonomy on the other hand. While maximum autonomy promises the best performance in satisfying user wishes for support in target oriented outdoor mobility, and therefore enables a more active lifestyle, it also requires a higher degree of user interaction. This might overtax a person with increasing cognitive impairment. Pure security applications require less to no interaction, enabling persons with dementia to walk around in the neighborhood but will not provide cognitive assistance for  target-oriented movement.

The goal for assistance systems should be a unified technical solution, by design taking the progressive nature of AD into account. In each stage of dementia, the user then receives assistance according to his current abilities in order to enable as much autonomy as possible. With our approach, we aim to bring together an engineering point of view on providing technical solutions with a user-driven perspective on needs and requirements for sustainable and sufficient support in social activities.

PO4.5. English Translation of an assessment for identifying triggers and causes of dementia related challenging behaviour - IdA

Holle Daniela, Zischka Matthias, Halek Margareta

Background: The Innovative dementia-oriented Assessment tool (IdA) guides nursing staff systematically through the process of identifying possible triggers and causes of challenging behaviour of people with dementia. It was developed on the basis of an international literature study and the need-driven-dementia-compromised-behaviour model (Kolanowski 1999). IdA was tested in relation to its practicability, content validity and construct validity in different nursing homes in Germany (Halek 2010). For its use in nursing practice, it is recommended as a guideline for team meetings and dementia-specific case conferences (Halek and Bartholomeyczik 2009). So far, the use of IdA was limited to the German context because of its restriction to the German language. The aim of the following study was to translate IdA into the English language as a first step to make IdA available for its use in English speaking countries.

Method: The translation of IdA was carried out according to the translation process of ISPOR (Wild, Grove et al. 2005). IdA was first translated into the target language (English) and subsequently translated back into the original language (German). Afterwards, the instrument was checked by two registered nurses from England (Great Britain) for its comprehensibility and conceptual similarities (cognitive debriefing).

Results: An English version of IdA is now available for use in nursing research and nursing practice. It was of great importance that translators were informed about the underlying concepts of the assessment and that each question of IdA was described in detail in a manual before translation took place.

Discussion: The translation of IdA into English has to be understood as a first step within the adaptation process of IdA for an English-speaking country. Further studies are needed to pilot IdA within the specific context of the target population and to test its linguistic appropriateness as well as its face and content validity. In addition, psychometric testings are needed that evaluate the scientific merit of IdA in the target country.

PO4.7. The Therapeutic Use of Doll Therapy for People with Dementia: A Systematic Review of the Literature

Mitchell Gary; Templeton Michelle

Introduction: The use of non-pharmacological treatments for people with dementia is rising as evidenced in reality orientation, reminiscence therapy, aromatherapy and music therapy (Holt et al, 2009; Vink et al, 2011 and Woods et al, 2012).  There are a number of interventions available to assist health professionals and carers with non-pharmacological treatment for people with dementia but not all of these appear to be as rigorously researched as the examples above.  The therapeutic use of dolls for people with dementia is one such therapy that has limited empirical evidence, but is appearing to be increasingly used in clinical practice (Stephens et al, 2012).  Despite its increase in clinical practice, there have been few empirical studies conducted and as yet no published systematic literature review on its practice.

Results of Review: There were limited empirical findings pertaining to the therapeutic use of doll therapy for people with dementia.  Almost all of the studies reviewed commended the use of doll therapy for people with dementia.  Some authors asserted that engagement with a doll could lead to an improvement of mood, a greater dietary intake, a sense of security and reduced levels of distress for a person with dementia.  Despite this cause for optimism a number of challenges were identified.  These included differences in the type of doll used and how to assess if a person with dementia would benefit from use of a therapeutic doll.

Discussion: The theoretical basis of doll therapy is complex and arises from the work of John Bowlby’s attachment theory (1969).  Despite its importance there was limited reference to this in the vast majority of the literature. As well as this there was limited consideration given to the obvious ethical dilemma of providing a doll to a person with dementia which some believe can infantilise people with dementia (Kitwood, 1997 and Mitchell and O’Donnell 2013).

Conclusion: Any therapeutic avenue that improves the wellbeing of a person with dementia is of great value and importance to clinical practice.  Doll therapy, however, requires close scrutiny and it should be approached with some caution as its practice is still in its infancy.

PO4.10. Data collection and processing in care of persons with dementia

Krupicka Radim, Viteckova Slavka, Szabo Zoltan, Vankova Hana, Jedlinska Martina, Holmerova Iva

Long-term nursing care for patients with dementia presents an important social, healthcare and economic issue, especially with demographic changes and changing disease patterns (increasing number of chronic disease patients). Despite ongoing modernization and quality improvement of such care in the Czech Republic, the availability of an appropriate care for patients is still low. Collection of data, which are necessary for appropriate planning and quality management of long-term care, is one of the most important issues for the executive organizations – not only on account of the economic purposes, but also for the social and demographic studies. These data analyze, for instance, self-sufficiency or frailty and their risk factors. The current practice for the data collection performed by the long term care institutions is still usage of the paper surveys. Such methods are not only inefficient but also inaccurate and homes for the future evaluation and storage of the data. The solution is a complex software tool, which could be used not only for survey creation, but also for the storage and processing of the collected data.

Our software was developed in cooperation with the Centre of Gerontology and CELLO Faculty of Humanities, Charles University in Prague and consulted with the Czech Alzheimer Society. It consists of two parts; firstly a survey designer which provides an easy-usable tool for the questionnaire creation, print or export to the PDF format. Second part is a web‑database system for data collection, process and storage. The completed questionnaires are scanned and imported to the system which automatically recognizes the data. The questionnaire can be also completed in a web form. In such way are the data fully accessible for the users and can be easily managed and exported to various formats by the scientists.

We aim to provide a „package of scales“ and a „package of criteria in care provision“ that will be easy to use by the care providers; moreover, their automated processing by the software would make data available not only for the clinical use but also (after anonymisation) for the organization of long-term nursing care in our country.

This research project is supported by the grant NT11325 of the Ministry of Health of the Czech Republic: “Long-term care for seniors: quality of care in institutions, organization’s culture and support of frail older persons.”

PO4.11. Prescription pattern of Chinese herbal products for Alzheimer's disease in Taiwan: a population-based study

Shun-Gu Lin, Jung-Nien Lai, Sui-Hing Yan

Background: People use complementary and alternative medicines hoping that such therapy might produce improvements in life quality, relieve behavioural and psychological symptoms, and maintain memory. For further improvement of the Chinese herbal products therapy, the goal of presented research was to analyse Chinese herbal products utility rate among people with Alzheimer's disease in Taiwan.

Methods: We have included all people who were newly diagnosed with Alzheimer’s disease by board-certified neurologists from a simple random sample of one million subjects among the insured general population and the rate of insured individuals has been consistently above 96% since 1997.The usage, frequency of service, and the Chinese herbal products prescribed for Alzheimer’s disease, among people who were newly diagnosed with Alzheimer’s disease by board-certified neurologists, were evaluated using a randomly sampled cohort of 1’000’000 beneficiaries recruited from the National Health Insurance Research Database. The logistic regression method was employed to estimate the odds ratios (ORs) for utilisation of Traditional Chinese Medicine (TCM).

Results: The database claims contained information on 1’137 people with Alzheimer's disease from 1997 to 2008. Among them, 889 (78.2%) Alzheimer's people used TCM outpatient services.

The present findings show that, among people with Alzheimer's disease, females and those aged 55-65 years were more likely to be TCM users than males and other age groups. The present results also demonstrate that people with Alzheimer’s disease who are living in urban area and have developed one or more behavioural and psychological symptoms of dementia were more likely to be TCM users than living in rural area and no symptom group. Diseases of the musculoskeletal system and connective tissue together with symptoms, signs, and ill-defined conditions were the two most frequent diagnoses in the disease category for TCM visits. Furthermore, Alzheimer’s people tended to use Chinese herbal products to deal with Alzheimer’s symptoms and side effects of anti-Alzheimer’s drugs. Maziren-Wan and Bu-Zhong-Yi-Qi-Tang are the two most frequently prescribed formulae by TCM doctors in Taiwan for treating Alzheimer’s disease.

Conclusion: Our results suggest that, based on the co-existence of both conventional and traditional Chinese medical treatments, most people with Alzheimer's consume herbal therapies with the intention of relieving their Alzheimer's-related symptoms, rather than because they have rejected standard anti-Alzheimer’s treatments. Although some evidence does support the use TCM to treat Alzheimer’s disease, the results from the current study may have been confounded by placebo effect, which emphasize the need for well conducted, double-blind, randomised, placebo-controlled studies in order to further evaluate the efficacy ofMaziren-Wan and Bu-Zhong-Yi-Qi-Tang on Alzheimer’s people.

PO4.12. “There’s a life for us, if we risk it!” Is a diagnosis of dementia a risky business?

Osborne Sally

This paper is a review of the literature as part of a longitudinal PhD research study exploring the nature of risk with persons with early stage dementia. Risk is a concept used in dementia research when examining choice and decision-making, and is primarily a negative phenomenon associated with danger and hazard. More recent theory acknowledges its dual nature -the idea of ‘good’ and ‘bad’ risk. A diagnosis of dementia puts a person’s fundamental rights to take a risk in question, which is often withheld or withdrawn if the person is seen as vulnerable - but who decides? Vulnerable groups in society have reported being soprotectedfrom risk that the protection itself paradoxically can become a source of harm. Support then, for people with dementia predominantly involves aversion to risk because of the concern for safety, protection and liability. This risk averse support comes at a cost however as it infringes upon the autonomy of people living with dementia. Beauchamp and Childress (1989) see the recognition of the right to take a risk as inherent in the principle of respect for autonomy, and this may come to mean the autonomy to take, or not to take a risk.  In her firsthand account of dementia, Morgan (2009) says that vulnerability is the greatest risk, as it places oneself more at risk from society.

Risk is being used in this study as an exemplar to view autonomy and rights, the right to independent action taken with free will and choice, when that is possible. It begins with the premise that risk is a part of life for everyone, and the dignity of risk, or the right to failure remains central to growth and the development of resilience. A cohort of younger people with a diagnosis has led to a greater focus on the person with dementia, and developing supportive and proactive care practices that meet their needs calls for knowledge produced from their own perspective.  This review has important legal, ethical and moral implications for dementia care and practice, and immediate and significant implications within the daily life of a person with an early diagnosis of dementia.  Morgan (2009) says ‘there is a life for us, if we risk it’.

PO4.14. Do not forget the songs – a choir for people with and without dementia

Blaschke Ursula

I’m walking in the sea of forgetting,
Drifting without time and future,
Losing myself in the dark of the day.
You – with your limits and beams which keep you up and show you the right direction –
Give me your hand.

In November 2012 a choir of a special kind entitled ‘Do not forget the songs’ started. It was special because in this choir old and young people, people with and without dementia, relatives and friends make music and sing together. The joint singing makes new encounters possible and strengthens old connections. Songs often awaken childhood memories and accompany us through our whole lives. Even if – from a certain age – our memories fade we do not lose the songs from the past. By listening and especially by singing together with other people we can become aware of memories and associate them with our present.

Even if in the course of a mental disease the memory fails and things we once remembered are no longer available songs as well as their texts are still familiar and can be sung. Singing together in a choir supports demented people and their relatives, friends and neighbours and helps them to find a way out of their social isolation and to break the taboo of a mental disease. For people suffering from dementia, too, their quality of life implies more than good medical and nursing care. A choir stands for normality, enables the involvement in social processes and creates social contacts.

The choir practice takes place in the afternoon twice a month. The conductor is a trained music geriatrician, and the project management lies with a trained female cultural geriatrician who has many years’ experience in the care of  people with dementia. The rehearsals are visited by about 30 people who love singing. Here people with a demented disease, people with a mental or physical disablement, people caring for sick relatives, people working on a full-time or part-time basis or as volunteers who are experienced  in the care of the elderly and people who do not suffer from dementia and who do not have a caring relationship come together. In the choir the participants can enjoy a fruitful togetherness and a stimulating exchange. Singing together in a choir implies for all participants that they share a piece of normality which they experience together.

 

 
 

Last Updated: Friday 30 August 2013

 

 
  • Acknowledgements

    The 23rd Alzheimer Europe Conference in St. Julian's, Malta received funding from the European Union, in the framework of the Health Programme. Alzheimer Europe and the Malta Dementia Society gratefully acknowledge the additional support provided by foundations and companies.
  • European Union
 
 

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