Which behaviours and symptoms are the most distressing for family carers of people with dementia?

Mature woman (60s) helping elderly mother (90s).

The November International Psychogeriatrics Article of the Month is entitled “A systematic review of the relationship between behavioral and psychological symptoms (BPSD) and caregiver well-being” by Alexandra Feast, Esme Moniz-Cook, Charlotte Stoner, Georgina Charlesworth, Martin Orrell.

During the course of dementia the vast majority of people will experience some form of behavioural or psychological symptoms (BPSD). BPSD include agitation, aggression, calling out repeatedly, sleep disturbance, and lack of interest and motivation. Numerous studies have reported that these BPSD can be a major source of distress for family caregivers of people with dementia. BPSD are also important predictors of family caregiver depression, burden and care home admission.

In the past people tended to group BPSD as one big category without trying to consider whether one symptom was more distressing for family caregivers than the others. We investigated this by reviewing research articles published in English between 1980 and December 2015 which reported which individual BPSD affected caregiver well-being.

So which behaviours and symptoms are the most distressing for family carers? We found 40 research articles which could help answer our question during our search, however, only 20 research articles were comparable and could be used in the analysis. When we looked at the 16 research articles which reported the frequency of BPSD it was found that depression in the person with dementia was the most distressing for caregivers, followed by agitation/aggression, and lack of interest and motivation. As expected, the person with dementia being excessively happy was the least distressing. However, surprisingly, when we looked at research articles that reported the relationship between BPSD and caregiver well-being (4 research articles) rather than frequency, we found that different BPSD were related to higher levels of distress. Irritable behaviour, inability to sit still, and delusions were the most strongly related to distress. Disinhibited behaviours demonstrating a lack of control, disregard for social conventions, impulsivity, and poor risk assessment were the least related to caregiver distress.

What is the take-home message? We are still unsure whether some BPSD impact caregiver well-being more than others. Studies which look at BPSD individually were limited, and had different ways of measuring BPSD and caregiver well-being. In future we need to measure BPSD and caregiver well-being consistently, and also look at BPSD individually rather than as one big category. Once this is addressed we can identify which BPSD affect well-being the most and prioritise these when we develop ways to support caregivers at home. Nevertheless, our inconsistent findings may not just be due to a lack of information and varied types of analysis, they may also be due to the individual differences between what caregivers find upsetting. To fully understand the relationship between caregiver well-being and BPSD, we also need to examine the influence of caregiver variables such as caregiver strategies, acceptance, gender, their relationship with the person with dementia and their confidence. We can then work out whether clinicians should be providing different kinds of support to different caregivers, depending on their circumstances.

The full paper “A systematic review of the relationship between behavioral and psychological symptoms (BPSD) and caregiver well-being” is available free of charge for a limited time here.

The commentary paper “Progress in BPSD research: analyzing individual BPSD might hold the key to better support caregivers” by Nicola T. Lautenschlager is also available free of charge for a limited time here.

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Get your sleep and treat depression to guard against Alzheimer’s disease

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The September International Psychogeriatrics Article of the Month is entitled “Associations between depression, sleep disturbance, and apolipoprotein E in the development of Alzheimer’s disease: dementia” by Shanna L. Burke, Peter Maramaldi, Tamara Cadet and Walter Kukull. This blog piece was released by Florida International University and can be viewed here.

New research suggests that lack of sleep and untreated depression may increase the risk of Alzheimer’s disease, even for those who do not have a genetic predisposition for the disease.

Depression and sleeplessness have long been considered symptoms of Alzheimer’s disease. This study indicates that whether in combination with genetic risk factors or on their own, untreated depression and lack of sleep may lead to the onset of Alzheimer’s disease dementia later in life.

“Previous research has attempted to explore the relationship between depression, sleep disturbance and Alzheimer’s disease. Our research is significant in that it is the first to find an increased risk of Alzheimer’s disease due to insomnia and depression independently, as well as in combination with genetic risk factors,” said Shanna L. Burke, assistant professor of social work at the FIU Robert Stempel College of Public Health & Social Work.

Alzheimer’s disease currently affects more than 39.9 million people worldwide. In the United States, it is the most common form of dementia in the elderly, affecting 1 in 10 people over the age of 65.

Although treating the genetic risk factors for Alzheimer’s disease isn’t possible yet, these findings suggest that alleviating depression and sleep disturbance may decrease the chances of a person developing the disease.

Burke served as the primary investigator for the study. She and the other members of the research team—Peter Maramaldi, Tamara Cadet and Walter Kukull—present their findings in Associations between depression, sleep disturbance, and apolipoprotein E in the development of Alzheimer’s disease: dementia, which was recently highlighted as “Paper of the Month” in the journal International Psychogeriatrics. Commentary and associated findings on the study were provided by Dr. David Steffens, chair of the department of psychiatry at the University of Connecticut.

“Future studies are needed to better understand the role of sleep in development of Alzheimer’s Disease, either as an independent risk factor or as a key depressive symptom that might further unlock the link between depression and Alzheimer’s,” said Steffens.

The full paper “Associations between depression, sleep disturbance, and apolipoprotein E in the development of Alzheimer’s disease: dementia” is available free of charge for a limited time here.

The commentary paper “J’accuse! depression as a likely culprit in cases of AD” by David C. Steffens is also available free of charge for a limited time here.

Risk factors for dementia diagnosis

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The July International Psychogeriatrics Article of the Month is entitled “Risk factors for dementia diagnosis in German primary care practices” by Anke Booker, Louis EC Jacob, Michael Rapp, Jens Bohlken and Karel Kostev. This blog piece was written for us by one of the paper’s authors, Karel Kostev.

A number of factors are associated with the risk of developing dementia, for example, it is well known that the risk of developing this disease is higher in the elderly. Several previous works were controversial and partly focused on a low number of patients. We analyzed the association of different potential risk factors with the risk of developing dementia in German primary care practices.

Based on the large database with electronic medical records we selected 11,956 patients with an initial diagnosis of dementia between January 2010 and December 2014. To have a comparison group, 11,956 controls without dementia were also included and were matched with cases on the basis of age, sex, type of health insurance and physician.
For each patient we selected several disorders potentially associated with dementia based on primary care diagnoses. We used a multivariate regression model and could see that the risk of dementia increased significantly in connection with the following variables: diabetes, lipid metabolism, stroke, Parkinson’s disease, intracranial injury, coronary heart disease, mild cognitive impairment, and mental and behavioral disorders due to alcohol use. Conversely, the risk of dementia decreased with the use of statins, proton-pump inhibitors and antihypertensive drugs.

What are the main strengths of the study? We analyzed the ‘real life’ data from the clinical practice including all possible high risk patients who would be excluded from clinical trials. Further strengths are the high number of patients and the number of primary diagnoses included in the statistical analysis.

Many of these factors are already known so why is this research important? We analyzed patients who visited primary care physicians. The study results clearly highlighted the importance of personalized follow-up by the physicians on patients not only with high risk diagnoses for dementia like mild cognitive impairment but also diabetes or cardiovascular diseases to try to prevent or delay dementia.

The full paper “Risk factors for dementia diagnosis in German primary care practices” is available free of charge for a limited time here.

The commentary paper “Clarifying dementia risk factors: treading in murky waters” by Halima Amjad and Esther S. Oh is also available free of charge for a limited time here.

Effectiveness of START psychological intervention in reducing abuse by dementia family carers: randomized controlled trial

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The June International Psychogeriatrics Article of the Month is entitled “Effectiveness of START psychological intervention in reducing abuse by dementia family carers: randomized controlled trial” by Claudia Cooper, Julie Barber, Mark Griffin, Penny Rapaport and Gill Livingston. This blog piece was written for us by one of the paper’s authors, Claudia Cooper.

People with dementia are at increased risk of elder abuse. When we asked family carers of people with dementia whether they had acted in ways that could be abusive, such as screaming or shouting at the person, in a previous study a third said that they had sometimes done so in the last few months. Carers who were more stressed were more likely to act abusively. The START (Strategies for Relatives) intervention for family carers of people with dementia has been shown to reduce the levels of depression and anxiety they report over 2 years. Abusive behavior is associated with depression and anxiety, so we wondered whether START might also be effective in reducing abuse. In this study, we wanted to find out whether family carers who received the START intervention were acting abusively less frequently than carers who did not receive the intervention.

We recruited 260 carers. 173 received the START intervention and 87 did not receive any additional treatment. There was no evidence that those who received START abused less. This is the first randomized controlled trial with abusive behavior towards people with dementia as an outcome. Nearly half of the participants reported significantly abusive behavior at the start of the study and the START intervention did not decrease this compared to those receiving usual treatment. A quarter of carers still reported significant abuse after two years, but those not acting abusively at baseline did not become abusive.

What is the take home message? There was no evidence that START, which reduced carer anxiety and depression, also reduced carer abusive behavior. For ethical reasons we frequently intervened to manage concerning abuse reported in both groups, and may therefore have reduced abuse in the control group, masking any effect of the intervention. Future dementia research should include elder abuse as an outcome, and consider carefully how to manage detected abuse.

The full paper “Effectiveness of START psychological intervention in reducing abuse by dementia family carers: randomized controlled trial” is available free of charge for a limited time here.

The commentary paper “The things that batter” by David Ames is also available free of charge here.

The dementia difference: Investigating imbalances in the treatment of patients with dementia

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The March International Psychogeriatrics Article of the Month is entitled “Healthcare resource utilization and cost in dementia: are there differences between patients screened positive for dementia with and those without a formal diagnosis of dementia in primary care in Germany?” by Bernhard Michalowsky, Tilly Eichler, Jochen René Thyrian, Johannes Hertel, Diana Wucherer, Wolfgang Hoffmann and Steffen Flessa. This blog piece was written for us by one of the paper’s authors, Bernhard Michalowsky.

A precise formal diagnosis of dementia is enormously important to initiate adequate and appropriate treatment and care in dementia. Despite the fact that international standards and evidence based guidelines recommends a precise formal diagnosis, it is well known that dementia is under-diagnosed. Even in high income-countries, fifty to eighty per cent of people with dementia do not receive a formal dementia diagnosis. These persons were unnoticed in most studies, also in cost-of-illness studies. These studies revealed that dementia is associated with substantial and increasing health care costs, which adds to making dementia a serious health care priority. However, are there differences in treatment, in care and in overall healthcare costs between patients formally diagnosed with dementia and those without a formal diagnosis?

We have studied this question in our general-practitioner (GP) based sample of persons who screened positive for dementia and found a significant difference in treatment and care and in medical care cost between patients with and those without a formal dementia diagnosis.

We set out to study this issue within the ongoing DelpHi-MV (Dementia: life- and person-centered help in Mecklenburg-Western Pomerania) trial, a general practitioner-based, cluster-randomized, controlled, intervention trial in the primary care setting. Eligible patients were 70 years or older, living at home and screened in general practitioner (GP) practices for dementia using the DemTect. As published in this month´s issue of the journal we assessed individual data about the utilization of medical and formal health care services of 240 primary care patients. The costs were assessed from the perspective of insurance and the associations between dementia diagnosis and costs were evaluated using multiple linear regression models.

We found that patients formally diagnosed with dementia were treated significantly more often by a neurologist, but less often by all other outpatient specialists, and more often received anti-dementia drugs, but less additional drugs. The higher utilization of anti-dementia drugs and neurologists/ Psychiatrist is in line with the recommendations of evidence-based German guidelines. However, less treatment by outpatient physicians and with additional drugs is out of line with published studies. It is questionable if this corresponds to an inadequate treatment.

Furthermore, we found that diagnosed patients underwent shorter and less frequent planned in-hospital treatments, especially surgeries. This could mean that in hospital a premature discharge is forced and necessary surgeries were possibly omitted or unnecessary surgeries were not conducted because hospitalization is associated with deterioration in health outcomes. Taking all of this into account, dementia diagnosis was significantly associated with less total medical care costs.

What is the take home massage of this research? Actually, it seems to be that there are differences in treatment, care and healthcare cost between persons with dementia and those without a formal dementia diagnosis. Furthermore, dementia diagnosis seems to be beneficial for receiving dementia-specific treatment, but currently insufficient to ensure adequate in-hospital, out-patient specialists and overall medication treatment. This should be validated in further studies and improved in routine care.

The full paper “Healthcare resource utilization and cost in dementia: are there differences between patients screened positive for dementia with and those without a formal diagnosis of dementia in primary care in Germany?” is available free of charge for a limited time here.

The commentary paper “What is the potential for improving care and lowering cost for persons with dementia?” by Karen Davis, Amber Willink and Halima Amjad is also available free of charge here.

Poisoning among older people with dementia

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The November International Psychogeriatrics Article of the Month is entitled “Dementia and intentional and unintentional poisoning in older people: a 10 year review of hospitalization records in New South Wales, Australia” by Rebecca J. Mitchell, Lara A. Harvey, Henry Brodaty, Brian Draper and Jacqueline C. T. Close.

This blog post was written for us by one of the paper’s authors, Rebecca Mitchell.

Older people who have dementia are hospitalized far more commonly than people without dementia. One of the most common reasons that older people with dementia are hospitalized is due to injuries, with poisoning one of the most common types of injury experienced. Some poisonings may be unintentional mistakes, but others are due to a person intentionally trying to harm themselves.

It is not surprising that older people with dementia might experience difficulty with taking different doses of medication on specific days or at specific times. In this study, we wished to identify if older people with dementia had a higher rate of being hospitalised following poisoning than people without dementia and to try to identify commonalities surrounding the circumstances of the poisoning event that would allow us to raise awareness of approaches needed to prevent future poisonings.

Most research that has looked at older people with dementia and poisoning has involved small studies that examined admission at only one or two hospitals. In this study, we were able to examine all hospital admissions following poisoning of older people in the largest state in Australia, New South Wales, and to identify the circumstances of the poisoning event for both people with and without dementia.

Our research found that older people with dementia had double the rate of hospitalisations for unintentional poisoning and one and a half times the rate of hospitalisation for intentional poisoning compared to older people who did not have dementia. We identified that anticholinesterase medications (taken for Alzheimer’s disease), antihypertensive drugs and laxatives were the common medications taken by an older person with dementia when they unintentionally poisoned themselves. The home was the most common location of the poisoning, but unintentional poisoning was 5 times more likely to occur in aged care facilities and at least 4 times more likely to occur in health service facilities compared to intentional poisoning.

As all people age, the number of medications they take generally increase, with around 4 or more medications taken by people aged 60 years and older. It is more common for mistakes with medications to be made, the higher the number of medications that need to be taken. The presence of dementia is only likely to increase the potential for errors to be made and make problems of adherence to a medication regimen more difficult.

The findings of our study suggest that there are opportunities to prevent unintentional poisoning by older people with dementia by improving medication storage options, such as the use of blister packs or Dosette boxes, by getting family members or carers to assist in medication administration and, in the aged care and hospital settings, by ensuring quality use of medicines, and accurate documentation and review regarding polypharmacy.

The full paper “Dementia and intentional and unintentional poisoning in older people: a 10 year review of hospitalization records in New South Wales, Australia” is available free of charge for a limited time here.

The commentary paper “Poisoning among older people with dementia: a wake up call” by Christopher D. Etherton-Beer is also available free of charge here.

Struggling to make Indian Curry…. Early indication of dementia?

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The September International Psychogeriatrics Article of the Month is entitled “Discriminative power of the advanced activities of daily living (a-ADL) tool in the diagnosis of mild cognitive impairment in an older population” by P. De Vriendt, T. Mets, M. Petrovic and E. Gorus.

 

This blog post was written for us by one of the paper’s authors, Prof. Dr. Patricia De Vriendt

Struggling to make Indian Curry…. Early indication of dementia?

With a diagnosis of Alzheimer’s dementia (AD) comes an understanding that the affected individual will suffer an inevitable and progressive decline in their functional abilities. In order to identify and treat dementia as early as possible the concept of Mild Cognitive Impairment (MCI) was established. MCI is seen as the intermediate stage between normal aging and AD and is characterized by subjective and objective memory impairments in the absence of functional decline [the loss of ability to perform everyday tasks without assistance]. However, this criterion is controversial since our previous studies and also many other studies showed that mild changes in Activities of Daily Living (ADL) can be present and probably predict conversion to dementia.

The overall issue was whether an evaluation of ADL might underpin the diagnosis of MCI in a valid and reliable way, with an accuracy comparable with cognitive assessment.

For this reason, we hypothesized that an evaluation of ADL should be done on the level of “the advanced (a)-ADL”, encompassing all the most complex activities one can perform, such as using (household) technology, preparing complex dishes, driving, going on holidays, doing sports, practice hobbies, or arts, etc. The a-ADL are considered as the most difficult activities, requiring high level cognitive organization, and accordingly are most vulnerable to early cognitive decline.

We set out to study this issue by developing and validating a new advanced (a)-ADL tool, based on the International Classification of Functioning, Disability and Health framework (ICF), evaluating high-level activities. Taking each participant as their own reference, we calculated a global Disability Index (a-ADL-DI), a Cognitive Disability Index (a-ADL-CDI), and a Physical Disability Index (a-ADL-PDI), based on the number of activities performed and the severity and causes of the functional problem.

The study published as ‘paper of the month’ evaluated the discriminative power of the a-ADL tool in order to establish diagnostic accuracy.

Based upon clinical evaluation and a set of global, cognitive, mood, and functional assessments, 150 community-dwelling participants (average age 80.3 years) were included and diagnosed as (1) cognitively healthy participants (n = 50); (2) patients with a-MCI (n = 48), or (3) mild to moderate AD (n = 52). The a-ADL tool was not a part of the clinical evaluation.

The a-ADL tool was able to detect the diagnostic distinction between cognitively healthy older persons, patients with a-MCI, and patients with AD. Both the a-ADL-DI and the a-ADL-CDI – of interest in this population – showed promising results and differed significantly between the groups; in contrast, the a-ADL-PDI did not.

What is the take home message of this research?

The a-ADL tool showed a good ability to distinguish normal and pathological cognitive aging. Its discriminative power for underlying causes of limitations is an advantage. Concluding, the evaluation of a-ADL, when administered in a systematic and scientific way, enables the diagnosis of MCI and – moreover – is experienced as less invasive by the patients. In the same time, this evaluation offers directions for clinical treatment, rehabilitation, advice and coaching.

 

The full paper “Discriminative power of the advanced activities of daily living (a-ADL) tool in the diagnosis of mild cognitive impairment in an older population” is available free of charge for a limited time here.

The commentary paper “A useful development in measuring activities of daily living” by David Ames is also available free of charge here.

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