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.

Advertisements

The road to depression: understanding the consequences of driving cessation in older women

shutterstock_161784053 credited

The August International Psychogeriatrics Article of the Month is entitled “Moderating effects of social engagement on driving cessation in older women” by Nancy A. Pachana, Janni K Leung, Paul A Gardiner and Deirdre McLaughlin. This blog piece was written for us by one of the paper’s authors, Nancy Pachana.

The ability to drive is considered an important functional skill, as well as a marker of independence, by people in most age groups, including older adults. A variety of physical and /or cognitive issues can require ceasing driving at any age, but this eventuality is perhaps both more common and more concerning later in life. For some older adults, having to cease driving can not only negatively impact participation in a range of activities but can also negatively impact emotional well-being.

A recent study at The University of Queensland examined this important relationship between driving cessation and depression in an older cohort of the Australian Longitudinal Study on Women’s Health (ALSWH). It is important to examine this issue of the consequences of driving cessation in women, because international data suggests that older women are more likely to stop driving, more likely to stop driving pre-maturely, and are also more vulnerable to depression than older men.

Data from over 4000 older women aged 76-87 were analysed over a three year period. In the study driving cessation was indeed associated with poorer self-reported mental health in the sample, congruent with many studies of older men and women, published from a range of countries. However, in our study we were able to identify a protective factor, namely engagement in social activities. In our cohort, older women who remained engaged in social activities despite ceasing driving were able to maintain a higher level of mental health in the face of having ceased driving than those women who were less engaged in such activities.

This is an important finding from an intervention and policy perspective. Driving cessation programs (such as the CarFreeMe (http://carfreeme.com.au/) driving cessation intervention developed at UQ) which help to instruct older drivers about how to stay mobile via public transport, can assist in maintaining access to social activities for those who cease driving. Such interventions are being made available to increasing numbers of older adults who cease driving.

Interventions as well as policies to increase both ease of access as well as facilitate the provision of social engagement opportunities for older adults have an important role in maintaining emotional well-being, facilitating meaningful community engagement, and protecting against social isolation. From our study we suggest that social support acts as a buffer to declining mental health in those women who cease driving later in life. Attention on older women who cease driving is important, as some in this group will be widowed and unable to rely on a spouse for transport if they cannot drive themselves. The maintenance of social networks has been shown to have a wide range of benefits to emotional and physical well-being in later life, and our data shows this list includes well-being for older women who no longer drive.

The full paper “Moderating effects of social engagement on driving cessation in older women” is available free of charge for a limited time here.

The commentary paper “Giving up driving: does social engagement buffer declines in mental health after driving cessation in older women?” by George W. Rebok and Vanya C. Jones is also available free of charge for a limited time here.

 

Risk factors for dementia diagnosis

shutterstock_438510931

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

shutterstock_310307075 credited

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

shutterstock_177792665

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.

Successful aging at 100 years

Image 1 Image2 (002)

Images: Participants from the PT100 – Oporto Centenarian Study being interviewed

The February International Psychogeriatrics Article of the Month is entitled “Successful aging at 100 years: the relevance of subjectivity and psychological resources” by Lia Araújo, Oscar Ribeiro, Laetitia Teixeira and Constança Paúl. This blog piece was written for us by one of the paper’s authors, Lia Araújo.

Successful aging is a desire that we all aspire for ourselves and for our loved ones. According to Rowe and Kahn’s definition, operationalized through the MacArthur study, individuals who met the three criteria of (i) avoiding disease and disability, (ii) high cognitive and physical functioning and (iii) engagement with life were identified as “successful agers”(1).

Another wish common to many of us is to live longer, why not up to 100!? Indeed, this can be a dream come true for an increasing number of individuals, since the oldest generations are becoming more representative and centenarians are likely to become more common(2).

Both wishes conjointly, a longer and successful aging, motivated the development of the PT100 – Oporto Centenarian Study(3). This population-based study was conducted in the north region of Portugal and included 140 centenarians who were interviewed face-to-face. We began to question ourselves what it means to be “successful” at such an advanced age and quickly got to ask the same question to our study participants. What we found was that sometimes the most relevant outcomes are from the perspective of the subjects themselves; and that together with the concern for problems and needs, we must capitalize on the real strengths of older people.

The criterion of little or no age-related decrements in physiologic function for those aging successfully does not apply to centenarians. However, when considering alternative criteria, based in centenarian´s self-perceptions of health, functional and cognitive capacity, a higher proportion of centenarians might be considered as successful. The paper also presents the influence of the available resources, such as individual strategies and external support, in improving subjective appraisals of successful aging, which confirms that certain internal resources (e.g., self-efficacy and purpose) are not overwhelmed by physical deterioration and may even gain power when corresponding and meaningful perceptions of oneself and one´s life are maintained in late life.

Successful aging at very advanced ages may not mean to stay healthy for even longer but rather to adapt. With that in our minds, as individuals, families, researchers, professionals or policy-makers, longer lives can and will be associated with improved quality of life in all ages and our wishes can become reality for our and next generations.

The full paper “Successful aging at 100 years: the relevance of subjectivity and psychological resources” is available free of charge for a limited time here.

The commentary paper “Success at 100 is easier said than done – comments on Araújo et al: successful aging at 100 years” by Peter Martin and Leonard W. Poon is also available free of charge here.

References
1. Rowe, J.W., & Kahn, R.L. (1997). Successful aging. Gerontologist, 37, 433-440.
2. Serra, V., Watson, J., Sinclair, D., & Kneale, D. (2011). Living Beyond 100: a report on centenarians. London: International Longevity Centre – UK.
3. http://www.pt100.pt

Mental health implications for older adults after natural disasters

cyclone yasi_earthquake2

The January International Psychogeriatrics Article of the Month is entitled “Mental health implications for older adults after natural disasters – a systematic review and meta-analysis” by Georgina Parker, David Lie, Dan J. Siskind, Melinda Martin-Khan, Beverly Raphael, David Crompton and Steve Kisely. This blog piece was written for us by one of the paper’s authors, David Lie.

Our interest in the susceptibility of older adults to disaster arose in the context of an unprecedented spate of natural disasters and dramatic events affecting the Australia- New Zealand region between 2009 and 2011.

New Zealand was affected by an air crash, earthquakes (notably Christchurch) and the Pike River Mine accident. A number of bushfires affected most regions of Australia notably the Black Saturday fires, which itself had followed a heatwave. Flood and cyclone preoccupied other parts of the country (e.g. Cyclone Yasi) amidst economically disruptive events such as volcanic ashclouds. Taken together these events killed hundreds of people and injured or displaced thousands more.

The broad psychological impact of the Tohoku earthquake, tsunami and nuclear disaster complex was the closing parenthesis for a period that demanded we knew more about the psychiatry of extreme events and particularly for older adults. Very little seemed to have been written as overview with the exception of a narrative review by Cherniak (2008) and a book on geriatric aspects of disaster psychiatry (2010).

As we explored the literature, contradictory themes emerged suggesting that older people were as likely, more likely or less likely than younger counterparts in their susceptibility to serious mental health sequelae after disasters.

Four broad theories to explain age-related resilience or vulnerability are outlined in the introduction to our paper which can be summarised as:

  • Experience counts
  • You don’t react emotionally as much as you age which is protective
  • The middle aged are stressed most, caring for their children and parents
  • As you age you become more vulnerable

We chose to analyse the highest quality research to determine broad patterns but much more needs to be learned. Our research (Parker et al., 2016 this issue) showed increased relative risk for PTSD and adjustment disorder but is based on particular disasters in particular contexts and only on natural disasters. Our included studies were characteristically events which were sudden, unheralded and producing significant physical destruction comprising four earthquakes and two tsunamis.

It could be that older adults actually have better outcomes in disasters where evacuation and/or preparation are possible or in areas where natural disasters such as hurricanes or cyclones are recurrent and an eventual part of life for those who live long enough.

We would certainly recommend further development of standardised, validated tools and research protocols for deployment in future disaster psychiatry studies to expedite our understanding. Whatever the reality of climate change, the world is indisputably ageing and increasingly living closer to shorelines and other places that put people “in harm’s way”.

The full paper “Mental health implications for older adults after natural disasters – a systematic review and meta-analysis” is available free of charge for a limited time here.

The commentary paper “Natural disaster, older adults, and mental health–a dangerous combination” by Meaghan L. O’Donnell and David Forbes is also available free of charge here.

References:

Cherniack EP.. The impact of natural disasters on the elderly. Am J Disaster Med. 2008 May-Jun;3(3):133-9.

Parker G, Lie DC, Siskind DJ, Martin-Khan M, Raphael B, Crompton D and Kisely S. Mental health implications for older adults after natural disasters – a systematic review and meta-analysis. Int Psychogeriatrics 2016 (2016), 28:1, 11–20

Geriatric mental health disaster and emergency preparedness. John A. Toner,
editor ; Therese M. Mierswa, associate editor, Judith L. Howe, associate editor.

%d bloggers like this: