How can we get access to the experiences of people with dementia? Suggestions and reflections

This paper suggests and discusses a methodological approach that aims to facilitate the inclusion of people with dementia in research where the ambition is to better understand their experiences. People with dementia have commonly not been included as informants in research as their cognitive deficits have been regarded as a hindrance. Moreover, in the qualitative research tradition, most inquiries rely on data obtained from interviews, thereby requiring communication and verbal skills, which are skills that are affected early in the cause of dementia. Consequently, the considerably under-researched area of how dementia is experienced and managed from the perspective of those afflicted has long been put aside. This paper suggests that a combination of qualitative observations and adapted interviews may make it possible for people with dementia to participate as research informants. Issues concerned with creating a relationship with informants with dementia and helping them to elicit their experiences are elaborated and discussed. Some suggestions are made concerning how the context can be used for this intent, and how the observations and interviews can be adapted to the informants with dementia.     

Multidisciplinary team,working with elderly persons living in the community: a systematic literature review

This paper suggests and discusses a methodological approach that aims to facilitate the inclusion of people with dementia in research where the ambition is to better understand their experiences. People with dementia have commonly not been included as informants in research as their cognitive deficits have been regarded as a hindrance. Moreover, in the qualitative research tradition, most inquiries rely on data obtained from interviews, thereby requiring communication and verbal skills, which are skills that are affected early in the cause of dementia. Consequently, the considerably under-researched area of how dementia is experienced and managed from the perspective of those afflicted has long been put aside. This paper suggests that a combination of qualitative observations and adapted interviews may make it possible for people with dementia to participate as research informants. Issues concerned with creating a relationship with informants with dementia and helping them to elicit their experiences are elaborated and discussed. Some suggestions are made concerning how the context can be used for this intent, and how the observations and interviews can be adapted to the informants with dementia.     

Reimagining Postdiagnostic Care and Support in Young-Onset Dementia

Although dementia has a profound impact in general, young-onset dementia causes additional problems and challenges as people are affected in their prime years. Awareness has increased that people with young-onset dementia and their families have specific care needs and dedicated services are necessary to accommodate those needs. However, in many countries, age-appropriate care and support for people with young-onset dementia is still largely unavailable. In this special article, barriers as well as facilitators for the development of postdiagnostic care and support in young-onset dementia are addressed. Drawing from the experiences in the Netherlands, the establishment of an appropriate infrastructure has proven a corner stone in service development in young-onset dementia. The establishment of a center at the national level for the development and dissemination of knowledge and affiliated regional centers that coordinate and offer care and support at the regional level has helped to reimagine, redefine, but more importantly also rearrange, postdiagnostic care and support in young-onset dementia in the Netherlands. This has resulted in care standards for service provision in young-onset dementia that have been incorporated in the dementia standard at the national level. Also, a quality hallmark has been developed to guide the arrangement of age-appropriate services at the local level. Moreover, specific training programs are in place for health care professionals involved in young-onset dementia. To be able to prioritize topics in research for the upcoming years, a scientific agenda has been established. The strong collaboration between organizations that provide a voice for people with dementia, care providers and research centers, that all strive to support people to live well with young-onset dementia has boosted these developments and may inspire other countries searching for ways to improve postdiagnostic care and support in young-onset dementia.     

Dualities of dementia illness narratives and their role in a narrative economy

The concept of ‘narrative economies’ has recently been proposed as a set of exchange relationships that, through biography and story‐telling, facilitate access to resources and act as a source of value. We utilise this concept to inform our analysis of 18 qualitative interviews with five people with dementia and four informal carers. Our participants are members of a pre‐existing group of dementia advocates, representing the voices of those living with the condition. There are a growing number of people in the early stages of dementia – like our participants – being called upon to account for their experience, as a means of developing a politicised ‘collective illness identity’. These interviews present an opportunity to study a group of people who are actively involved in speaking as, and for, people with dementia. Four themes emerged from the data: becoming a voice of or for people with dementia; biographical reinforcement; responsibilisation; and resistance. These themes illustrate the ways in which people with dementia participate in their own identity construction and, as representatives of those living with dementia, they also illustrate the ways in which illness narratives produce material and symbolic value.     

Dementia care provision in rural Scotland: service users' and carers' experiences

There has been global neglect of service users' and carers' experiences of dementia care provision in rural areas. The present paper draws on a qualitative study of service provision for people with dementia and their carers in remote and rural Scotland. It draws on interviews with 15 people with dementia and 16 carers to explore their views about health and social dementia care service provision in rural Scotland. A further 14 carers of people with dementia participated in one of three focus groups. The paper discusses perceived gaps in services as well as positive aspects of dementia service provision which service users attribute to living in a rural area. The important issues this raises for the development of dementia care provision in rural areas are briefly discussed.     

Summary of the practice guideline 'Dementia' (second revision) from the Dutch College of General Practitioners

The general practitioner (GP) should be aware of clues pointing to dementia. The GP can establish the diagnosis himself or refer the patient for extended testing. The diagnosis of dementia focuses on memory impairment, other cognitive impairments and decreased functioning in daily life. For patients with dementia and their relatives, information and advice are more important than medication. The GP must take care aspects into consideration as well as the way patients' relatives cope with the dementia patient. The treatment and care of the patient with dementia and the relatives requires good coordination and collaboration with other health workers.     

Mortality from dementia in Norway, 1969-83.

From 1969 to the end of 1983 in Norway, dementia was coded as the underlying cause of death from 2058 death certificates, and as a contributory cause from 19,459. This is 3.56% of the total number of deaths. It seems that a considerable proportion of dementia cases are noted on death certificates in Norway. Death rates based on dementia as the underlying cause of death have increased with time, but when including contributory causes, rates have declined. The data may be useful in epidemiological studies, eg, to search for aetiological clues for Alzheimer's disease. Due to the inclusion of contributory causes of death in the registers and to the high number of dementia cases noted on death certificates, Norwegian mortality data on dementia are probably of better quality than in most other countries.     

Conversion Between the Mini-Mental State Examination and the Montreal Cognitive Assessment for Patients With Different Forms of Dementia

ObjectivesThe Mini-Mental Status Examination (MMSE) and the Montreal Cognitive Assessment (MoCA) are 2 frequently used brief cognitive screening tasks. Here, we provide a conversion method from MMSE to MoCA for patients with Alzheimer's dementia, frontotemporal dementia, and Parkinson dementia/Lewy body dementia, as well as for patients with dementia and with or without previous stroke. This conversion is needed as everyday clinical practice varies in their use of the 2 scales, which makes comparisons between studies, meta-analysis, and patient cohorts difficult.DesignObservational cohort study.Setting and ParticipantsA total of 387 patients with recently diagnosed dementia in memory clinics from the Swedish registry for cognitive/dementia disorders (SveDem) from 2007 to 2018.MethodsOverall, 387 patients of the Swedish registry for cognitive/dementia disorders with both MMSE and MoCA scores were evaluated. An equipercentile equating method was used to convert MMSE to MoCA scores in the different patient populations. Furthermore, receiver operating curves were used to examine whether MMSE or MoCA scores can distinguish between patients with different dementia types.ResultsMMSE scores were converted to MoCA scores for all dementia types and depicted in a conversion table. Results show that the equipercentile equating method and log-linear smoothing allow the creation of a conversion table in which for each test score of the MMSE, the equivalent score of the MoCA for each investigated group can be looked up (and vice-versa).Conclusions and ImplicationsThis study reports a reliable and easy conversion for transforming MMSE to MoCA scores (and vice-versa) in patients with Alzheimer's dementia, frontotemporal dementia, Parkinson dementia or Lewy body dementia, as well as patients with dementia with and without previous stroke.     

Vascular dementia

Vascular dementia is one of the most frequently occurring dementia syndromes. Its prevalence is about 5% among subjects above 85 years of age. Elevated blood pressure and atherosclerosis are the most important risk factors. According to international criteria, vascular dementia usually occurs within three months after having a stroke. However, the diagnosis can be difficult as some strokes are clinically 'silent' and may go unnoticed. Other factors may also contribute to the dementia syndrome, and concomitant depression may mask its clinical picture. In population studies, treatment of vascular risk factors is associated with a relatively low incidence of vascular dementia, but this effect has not been investigated in a randomized clinical trial. The value of acetylsalicylic acid in attenuating cognitive deterioration in patients with vascular dementia is uncertain. Acetylcholinesterase inhibitors may slow down cognitive decline not only in some patients with Alzheimer's disease but also in patients with vascular dementia.     

Gender,citizenship and dementia care: a scoping review of studies to inform policy and future research

Gender is a neglected dimension in public discourse related to people with dementia. Those living with this condition are typically portrayed in policies and strategies in gender neutral terms as ‘people with dementia’ and ‘family carers’ as if gender does not matter, when clearly it does. The purpose of this scoping review was to take stock of knowledge about gender differences in relation to dementia care to inform policy and future research. The work is grounded in a feminist perspective to citizenship, as this provide a lens with which to expose and examine gendered assumptions within dementia studies. A search of four databases, including CINAHL, Web of Science, Medline and Cochrane was conducted using systematic techniques between May and July 2014. A repeat search was conducted in February 2015. We found a significant amount of valuable research concerned with gender differences in relation to dementia care published from 1990 to 2014; the majority of which lacks a feminist citizenship perspective. Moreover, a disproportionate number of studies focused solely on caregivers rather than citizens with dementia. As such, questions about gender equality are not being raised and the voices of men and women with dementia are silent. Thus we argue for increased gender‐sensitivity in policy making and recommend that social scientists inject a feminist citizenship perspective into their work.     

Screening for dementia syndromes: the Hungarian experience with the 7-Minute-Test

INTRODUCTION: The screening and recognition of dementing disorders are considered as important tasks of general practitioners. Despite of the recent progress made in the treatment of cognitive, behavioral symptoms and slowing down the rate of progression, difficulties are still existing in the early detection, and the most frequent dementia forms such as Alzheimer's disease (AD) and vascular dementia (VD) are underdiagnosed in Hungary. Any rapid, easy-to-use dementia screening method therefore could be of great value in the community. AIMS: The Hungarian standardisation of a new dementia screening tool, the 7 Minute Test (7MT) has been reported here. Accuracy, sensitivity and specificity were calculated. The authors provide new data regarding the discriminative power of this test in a variety of dementing and dementia related conditions. METHODS: The test results of 339 probands, referred to the local memory clinic, were evaluated in all subtests, where orientation in time, memory, verbal fluency, and visuoconstructive skills are assessed. The patients were clustered into seven groups according to their clinical diagnosis, such as: Control (CNT), Mild Cognitive Impairment (MCI), AD, VD, mixed AD-VD, depression (D) and Organic Amnestic Syndrome (OAS). RESULTS: In overall, the test successfully discriminated 77% of the CNT and all disease cases (sensitivity 85%, specificity 55%). When the AD and CNT groups were compared separately, the highest values: 91% sensitivity, 86% specificity have been found. A total score of 139 has been suggested as a cutoff value to separate CNT and dementia cases. These results suggest that the test is suitable to classify CNT and "real" dementia cases (AD, VD, mixed AD-VD), but not valid within the real dementia groups. Furthermore, it is not helpful for the identification of MCI, pseudodementia cases (D) and OAS as well. CONCLUSION: The 7MT could be a valuable dementia screening tool in the primary care, but it is not specific for any form of dementia.     

General practitioners' experiences and understandings of diagnosing dementia: factors impacting on early diagnosis

This article reports findings from three linked qualitative research projects that explored how Australian general practitioners (GPs) spoke about their experiences in diagnosing dementia and their views on early diagnosis and barriers towards early diagnosis. The authors conducted this research with the aim of elucidating the GP perspective and using this to better understand the process of diagnosing dementia and delays in diagnosing dementia. Twenty-four GPs based in Australia participated in the study (eleven females and thirteen males). Six of these GPs worked in rural practices, eight in a large town and the remainder in urban practices in a capital city. The major themes in GPs' accounts of the diagnosis of dementia could be grouped under the headings of 'recognizing dementia', 'holistic viewpoint', 'family members and patients' and 'medication'. Key findings are that dementia is a complex condition that takes time to diagnose. Diagnosis may involve conflict between GPs, family members/carers and the person with dementia (PWD). GPs did not consider that diagnosing dementia early was particularly important and may in fact be harmful to some patients. They are skeptical about the advantages of dementia medications. GPs assess the need for a formal diagnosis of dementia within the broader context of their older patients' lives. They are more likely to pursue a formal diagnosis in situations where they see it leading to benefits for their patient such as accessing dementia specific services. Increasing the availability of support services for PWD and educating GPs about the benefits of a formal diagnosis of dementia for stakeholders other than PWD, for example family members and carers may increase the likelihood that they will diagnose dementia early.     

Mortality from dementia in advanced age: a 5-year follow-up study of incident dementia cases.

Five-year follow-up of a community-based, 77+ old cohort including incident dementia cases was used to evaluate the impact of dementia on the risk of death, taking into account other chronic conditions potentially related to death, and contrasting Alzheimer's disease (AD), and vascular dementia (VaD). In this population, 70% of the dementia cases died during the five years after diagnosis, with a mortality rate specific for dementia of 2.4 per 100 person-years. After controlling for sociodemographic variables and comorbidity, 14% of all deaths could be attributed to dementia with a risk of death among demented subjects twice as high as that for non-demented people. Mortality risk ratios were 2.0 (95% confidence interval 1.5-2.7) for AD and 3.3 (95% confidence interval 2.0-5.3) for VaD. This study confirms that dementing disorders are a major risk factor for death. Even in the oldest old (85+), dementia shortens life, especially among women.     

When walking becomes wandering: representing the fear of the fourth age

Dementia is linked to behavioural changes that are perceived as challenging to care practices. One such behavioural change is ‘wandering’, something that is often deeply feared by carers and by people with dementia themselves. Understanding how behavioural changes like wandering are experienced as problematic is critically important in current discussions about the behavioural and psychological symptoms of dementia. In this article we draw on our secondary analysis of qualitative interviews and focus groups with carers of people with dementia to critically question ‘when does walking become wandering’? Drawing on theoretical perspectives from anthropology, sociology and human geography to explore experiences of carers and of people with dementia, we argue that a conceptual shift occurs in how pedestrian activity, usually represented as something purposeful, meaningful and healthy (walking) is seen as something threatening that needs managing (wandering). We demonstrate how this shift is connected to cultural assumptions about the mind‐body relationship in both walking and in dementia. We further argue that the narratives of carers about wandering challenge the notion of ‘aimless’ walking in the fourth age. This is because, as these narratives show, there are often pronounced links to specific areas and meaningful places where people with dementia walk to .     

Screening for dementia: family caregiver questionnaires reliably predict dementia

INTRODUCTION: Because of increasing numbers of patients with diseases that cause dementia, primary care physicians must use efficient assessment procedures in their clinics. Important advantages of screening for dementia include determination of the patient's cognitive capacity to participate competently in his/her own medical care and early diagnosis, which enables administration of medications that preserve some cognitive functions. METHODS: A study was conducted to determine whether questionnaires completed by a family caregiver about a patient could differentiate between those with dementia and those with other neurological disorders that do not cause dementia. Clinical and demographic information gleaned from more than 330 consecutive multidisciplinary outpatient dementia clinic assessments were entered into an Institutional Review Board-approved database and analyzed post hoc to answer several research questions. RESULTS: Three questionnaires completed by family caregivers about patients were able to differentiate reliably between patients with dementia with a variety of degenerative disorders and patients without dementia with other neurological disorders that often are mistaken for dementia. When these questionnaires are combined with a patient test (Mini-Mental State Examination), an accurate prediction of which patients suffer from a true degenerative disease that causes dementia was robust (effect size of R2 = 0.81, P <.0001 for the multiple logistic regression analysis). DISCUSSION: These instruments assist the primary care physician to determine which patients seem to suffer from a disease that causes dementia and need further assessment by the physician or at a specialized dementia clinic. The ultimate goal is to assure that patients receive appropriate medical management as early in the disease process as possible.     

Homocysteine and mild cognitive impairment: Are these the tools for early intervention in the dementia spectrum?

Dementia, being a neurodegenerative disease, has devastating consequences not just for the ailing but also for the carers as it has a tremendous negative impact on the quality of life. The pathophysiology of dementia commences far earlier than its diagnosis. Mild cognitive impairment (MCI) is a stage prior to definite dementia. The progression from MCI to dementia is insidious with no definite demarcation, thus making diagnosis clinically difficult at an early stage. This paper attempts to throw light on the epidemiology, risk factors and the aetiopathogenesis of MCI. It further attempts to elaborate on the rate of conversion of MCI to definite dementia and the factors influencing the same. Many established as well as probable, modifiable as well as non-modifiable risk factors influence the progress of MCI to definite dementia. Homocysteine, a sulphur containing amino-acid has been identified as a probable risk factor for the dementia spectrum. Various existing clinical evidences and biological plausibility towards probable link between homocysteine and dementia are discussed in this paper. B vitamin mediated homocysteine reduction and cognitive outcomes demonstrate mixed results. This review attempts to evaluate hyperhomocysteinaemia and MCI as a brain risk marker and assess their potential for future research with a view to attempt early intervention.     

Fewer referrals to Swedish emergency departments among nursing home patients with dementia, comprehensive cognitive decline and multicomorbidity

Objectives

The objective was to describe the extent to which nursing home patients had cognitive impairments and were diagnosed with dementia. Furthermore, to describe and compare multicomorbidity, health status and drug use in the three subgroups; dementia diagnosis/not referred, dementia diagnosis/referred and no dementia diagnosis/not referred to an emergency department (ED) over a one-year period.

Methods

A cross-sectional follow-up study was carried out in Sweden. RAI/MDS assessments were conducted on 719 patients in 24 nursing homes, of whom 209 were referred to EDs during a one-year period, accounting for 314 visits. This study involved an extensive examination of the population.

Results

The 719 patients were reported to suffer from comprehensive cognitive impairments, which not accorded with the dementia diagnoses, they were significantly fewer. Cognitive decline or dementia diagnosis contributed to a significant decrease of referrals to EDs. Patients with dementia diagnosis/not referred had difficulties understanding others, as well as impaired vision and hearing. Patients with dementia diagnosis/referred usually understood messages. Low BMI, daily pain, multicomorbidity and high drug consumption occurred in all groups. Patients with no dementia diagnosis/not referred had significantly less multicomorbidity. Neuroleptica was significantly more prevalent among those with dementia diagnosis.

Conclusion

Dementia remains undetected. Patients with cognitive decline and dementia are probably as sick as or even worse than others but may, due to low priority be undertreated or referrals avoided with the objective to provide good care in the setting. Observational studies are needed to identify what is done and could be done in referral situations.     

'The demented other': identity and difference in dementia

This paper explores the impact of the concepts of identity and difference on demented persons (especially on persons with Alzheimer's disease). The diagnosis of dementia is often synonymous with the assertion that demented individuals are no longer capable of making reasonable decisions. But rationality is an important aspect of characterizing a person's identity. Hence, this prevailing image of dementia as a loss of self and a change of identity leads to the situation that demented persons represent difference and otherness. Here, the brain and the mind act as the source for difference. The paper discusses several identity concepts with regard to demented persons and the relationship between identity and difference in dementia. This analysis is accompanied by an examination of the current biopolitics of dementia and ageing as biopolitics constitutes the socio-political-medical understanding of dementia. Challenges and possibilities for dementia care will be explored in the context of this complex relationship between theoretical concepts and political, medical, and health-care practices.     

The Diagnosis of Delirium Superimposed on Dementia: An Emerging Challenge

Delirium occurring in patients with dementia is referred to as delirium superimposed on dementia (DSD). People who are older with dementia and who are institutionalized are at increased risk of developing delirium when hospitalized. In addition, their prior cognitive impairment makes detecting their delirium a challenge. The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition and the International Statistical Classification of Diseases and Related Health Problems, 10th Revision are considered the standard reference for the diagnosis of delirium and include criteria of impairments in cognitive processes such as attention, additional cognitive disturbances, or altered level of arousal. The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition and the International Statistical Classification of Diseases and Related Health Problems, 10th Revision does not provide guidance regarding specific tests for assessment of the cognitive process impaired in delirium. Importantly, the assessment or inclusion of preexisting cognitive impairment is also not addressed by these standards. The challenge of DSD gets more complex as types of dementia, particularly dementia with Lewy bodies, which has features of both delirium and dementia, are considered. The objective of this article is to critically review key elements for the diagnosis of DSD, including the challenge of neuropsychological assessment in patients with dementia and the influence of particular tests used to diagnose DSD. To address the challenges of DSD diagnosis, we present a framework for guiding the focus of future research efforts to develop a reliable reference standard to diagnose DSD. A key feature of a reliable reference standard will improve the ability to clinically diagnose DSD in facility-based patients and research studies.     

Early Differentiation of Senile Dementias

Neurologic causes of dementia include cortical and subcortical pathology, as well as intracranial space-occupying lesions. The elderly are particularly prone to metabolic and toxic encephalopathies with associated delirium, dementia, or both. Many of these disorders are potentially reversible, but appropriate management requires comprehensive assessment.