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.

Insomnia more common in teens whose mums had postnatal depression

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More than a third (36%) of teenagers whose mothers suffered from postnatal depression experienced sleep problems at the age of 18, compared to only one in five (22%) teenagers whose mothers didn’t suffer from postnatal depression.

Insomnia affects between one in two and one in 10 people worldwide and can be debilitating. It can lead to memory problems and fatigue, and raises the risk of developing high blood pressure and heart disease.

Such health problems have a high economic cost, both direct (healthcare, drugs, tests and research) and indirect (absenteeism, lack of productivity).

Now, for the first time, researchers have looked to see if postnatal depression in women could contribute to their children having sleep problems in adolescence. It is already well established that postnatal depression can affect a child’s mental health and how well they do at school but the impact of it on sleep has not been examined before.

By looking at Children of the 90s (University of Bristol), a unique 25-year-long study of 14,500 mothers and their children (born in 1991 or 1992), researchers were able to ask teenagers when they were 16 and 18 about their sleep problems and compare their answers to the information more than 10,000 mothers had provided years before about postnatal depression. The study is based at the University of Bristol.

By assessing the problem so many years after the children were born, the researchers were able to rule out sleepless nights during infancy as the cause of the postnatal depression and ask the teenagers themselves about their sleep problems rather than rely on what their mothers said (which may have been affected by their depression).

What they found is that more than a third (36%) of teenagers whose mothers suffered from postnatal depression experienced sleep problems at the age of 18, compared to only one in five (22%) teenagers whose mothers didn’t suffer from postnatal depression.

This was the case even after a number of important factors were taken into account:

  • Whether the teenager suffered from depression when they were aged 16
  • Whether the teenager had experienced sleep problems as a young child (measured at the ages of 6, 18 and 26 months)
  • The mother’s education, her age when the child was born, and the number of other children in the family
  • Whether the mother smoked or experienced depression when pregnant

Although a mother’s depression increases the likelihood that her child will have sleep problems, the reasons for this are not clear.

Dr Rebecca Pearson from the University of Bristol, who supervised the research, suggests three possible reasons:

  • Shared genes between the mother and child can affect sleeping patterns
  • Antenatal depression which precedes postnatal depression can have a biological effect on the child while it is still in the womb
  • Postnatal depression can make it more difficult for mothers to help regulate their baby’s emotions and their ability to establish regular and calm sleeping patterns. Continued depressive symptoms in the mother during her child’s early years (up to age 12) were also found to play a role.

Speaking about the findings, she said:

“Postnatal depression can make it more difficult for mothers to interact with their babies and this could make it particularly hard to establish a regular sleeping routine and help babies to learn to regulate their emotions and settle themselves to sleep. A noisy, disruptive house can also make it difficult for children to sleep and such environments can be linked to maternal depression.

Depressed mothers are increasingly offered support to improve their mood and to promote positive interactions with their babies and we would advocate that such support also considers the child’s sleeping pattern. As we’ve shown here, maternal depression can potentially have serious long-term implications for the health and wellbeing of both the mother and her child.

There is substantial evidence that postnatal depression is linked with a broad range of child difficulties. Individual risks are often small but because depression in mothers can influence so many aspects of their child’s development, in total it is very costly.”

Anna Taylor, a medical undergraduate student at the University of Bristol who led the research, explained that:

“Poor sleep affects school performance as well as physical and mental health, all of which can have significant impact on the child’s life and what they are able to achieve, so preventing sleep problems is really important. The cost of supporting depressed mothers is far smaller than the longer-term costs of dealing with multiple problems later in life.”

Dr Pearson added:

“As far as we’re aware, no one has ever looked at the long-term effects of postnatal depression on a child’s sleeping habits as reported by the children themselves as teenagers. Luckily, Children of the 90s, with its 25-year dataset, allows us to go back in time and examine these issues in great detail.”

via University of Bristol – ALSPAC – Insomnia more common in teens whose mums had postnatal depression

The full paper, The association between maternal postnatal depressive symptoms and offspring sleep problems in adolescence has been published Open Access in Psychological Medicine, and can be viewed here.

Towards an exposure-dependent model of post-traumatic stress

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Imagine sitting at your desk at work, on a Friday afternoon, just waiting for the weekend to begin. Then; a loud bang, the walls are shaking, your office windows shatter. With ears ringing, you crawl out into the corridor. The guy in the office next to yours is hurt. His shirt is covered in blood. You help him down the stairs. There’s smoke and dust everywhere. By the main entrance you pass someone who is beyond help.

Or; you are on summer holiday, relaxing at the family cottage. Suddenly, your husband calls out, telling you to come and watch the news. On the TV you see pictures from the bombed-out office building where you normally spend your workdays. You try to remember; who among your colleagues is on holiday this week? And who is at work, now possibly dead or injured? You immediately call a colleague; all she can tell you is that a bomb has gone off. No one knows what to do next.

On July 22nd 2011, these scenarios sadly became reality when a right-wing extremist triggered a car bomb in the executive government quarters in Oslo, Norway. Several office buildings were severely damaged in the blast. Luckily, as the terror attack happened on a Friday afternoon in July, a lot of people were on holiday or had gone home for the day. Still, 8 people were killed and more than 200 were injured. The Norwegian nation was in shock.

In a new study published in Psychological Medicine, researchers at the Norwegian Centre of Violence and Traumatic Stress have examined patterns of post-traumatic stress reactions (from approx. 10 months to 3 years after the attack) in the government employees who were or were not present at work at the time of this terrible attack. What they found might hold an important key to our understanding of post-traumatic stress disorder.

For government employees who were at work that fateful day, anxiety provoking intrusive memories from the incident seem to be the main driver behind prolonged stress. Together these primary symptoms seem to work as the “psychological engine” behind the development of other common post-traumatic stress reactions, in some cases (24%), creating the complex, heterogeneous post-traumatic stress symptomatology we see in sufferers of post-traumatic stress disorder.

However, for the indirectly exposed employees (those who were on holiday or had gone home) dysphoric arousal (sleeping difficulties, irritability and problems concentrating) emerged as the best predictors of prolonged symptom severity. Although present in their symptomatology, intrusions of that fateful day do not include the same horrific details (e.g. smoke, blood, fire), and therefore do not seem to provoke the same anxious arousal. Instead a sequel of dysphoric arousal and emotional numbing, possibly related to depressive symptoms or negative affect, seem to emerge.

Why is this difference important?

This difference is important because it adds important empirical clues to contemporary theories that help us understand the development and chronicity of post-traumatic stress disorder. And in turn, it sheds light on how to treat sufferers of this debilitating disorder.

The full paper, “Towards an exposure-dependent model of post-traumatic stress: longitudinal course of post-traumatic stress symptomatology and functional impairment after the 2011 Oslo bombing” by Ø. Solberg, M. S. Birkeland, I. Blix, M. B. Hansen and T. Heir can be viewed here free of charge for a limited time

Danish Suicide Prevention Clinics prevent more than deaths by suicide

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This post was written by Johannes Birkbak and Annette Erlangsen.

A new Danish study finds that psychosocial therapy for suicide prevention does more than preventing deaths by suicide. The treatment also reduces risk of death by other causes.

Mental and physical well-being are interrelated. People at risk of suicide have a considerably increased risk of dying, not only by suicide, but also by other causes of death.

A group of Danish researchers examined causes of death among nearly 6,000 persons who, following an episode of deliberate self-harm, received psychosocial therapy at one of the Danish Suicide Prevention Clinics. The group who received the intervention was compared to people receiving standard care following an episode of deliberate self-harm. Psychosocial therapy was associated with a 37% decrease in alcohol-related deaths as well as in deaths due to injuries and accidents. The risk of dying by a heterogeneous group of medical causes was reduced by 39%, while the risk of dying by suicide was reduced by 28%.

“This is the first European study to show improvements in mortality among persons who have received psychosocial therapy after deliberate self-harm. While we knew that the treatment in the Suicide Prevention Clinics does more than prevent suicidal behavior, we found it important to uncover what additional causes of death were prevented by the intervention,” says Johannes Birkbak, M.D., from the Danish Research Institute of Suicide Prevention, Mental Health Centre Copenhagen.

In conjunction with other research in this area, the results indicate that psychosocial therapy might enable patients to revise their coping strategies and, as a possible result, improve their general lifestyle, which might explain the mortality reductions.


About the study:

The study compares 5,678 people who received psychosocial therapy at a Suicide Prevention Clinic after an episode of deliberate self-harm with people who received standard care following an episode of deliberate self-harm. The multi-center study enrolled users from seven of the regional Suicide Prevention Clinics in Denmark during 1992-2011.

Using data from the national Danish registers, the researchers followed the treatment group and the control group for up to 20 years, and all deaths and causes of death were registered.

Given that the study evaluated an already established intervention after self-harm, it was not possible to randomise the patients. To account for this, a comparison group was selected to match the treatment group on 31 different factors using propensity score matching. The treatment group and the control group are comparable on factors such as age, sex, social background and clinical factors.

The study found that psychosocial therapy was associated with reduced risk of death by suicide, injuries and accidents, mental disorders, alcohol-related causes as well as a group of heterogeneous medical causes. Deaths caused by cancer and diseases of the circulatory system were not significantly reduced.

The study was designed and carried out by the Danish Research Institute for Suicide Prevention.

The full paper “Psychosocial therapy and causes of death after deliberate self-harm: a register-based, nationwide multicentre study using propensity score matching” by Johannes Birkbak, Elizabeth A Stuart, Bertel Dam Lind, Ping Qin, Elsebeth Stenager, Kim Juul Larsen, August G Wang, Ann Colleen Nielsen, Christian Møller Pedersen, Jan-Henrik Winsløv, Charlotte Langhoff, Charlotte Mühlmann, Merete Nordentoft, Annette Erlangsen can be read free of charge for a limited time here.

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.

Medicalisation of young minds: new study reveals 28% rise in antidepressant prescribing amongst 6-18 year olds « Swansea University

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Antidepressant prescribing amongst children and young people has shown a significant increase of 28% in the past decade, even though recorded diagnoses of depression have gone down, according to new research published today.

One in ten children and young people suffer from some kind of mental health problem, including depression and anxiety. Concerns about under-diagnosis and under-treatment contrast with worries about over-prescribing and the medicalisation of unhappiness in young people.

The research, published in Psychological Medicine, and carried out by a team which included several Swansea University experts, was led by Ann John, associate professor at Swansea University Medical School, who is also a qualified GP. The team looked at data from 358,000 registered patients between 6 and 18 years old, living in Wales, UK, between 2003 and 2013. The data was drawn from GPs and other NHS primary care services.

The research found that:
• Antidepressant prescribing rose significantly, by 28%, mainly in older adolescents
• Depression diagnoses showed a steady decline by just over a quarter, while symptoms of depression more than doubled
• Unlicensed citalopram prescribing occurs outside current guidelines, despite its known toxicity in overdose
• Just over half of new antidepressant prescriptions were associated with depression. The rest were associated with diagnoses such as anxiety and pain

The findings led the researchers to call for new strategies to implement current guidance for managing depression in children and young people.

Dr Ann John, associate professor at Swansea University Medical School, said: “These findings add to the growing debate over increasing prescribing of anti-depressants to children and young people.

The main issue is whether they being prescribed with enough cause. The rise in prescribing may reflect a genuine increase in depression and its symptoms, or increased awareness and better treatment by GPs, or poor access to psychological therapies and specialist care, or even increased help-seeking.

Whatever the explanation it’s important that each individual young person is listened to and gets the right kind of help for their problem. We need to support those who support young people and their families, helping them to act in keeping with current guidance.”

Dr John underlined the importance of responding appropriately to the needs of young people:

“The teenage years are a phase of gaining independence, engaging with the world and testing boundaries. This can result in a normal developmental range of emotional responses- stress, loneliness, sadness and frustration. For others the mental health issues are more serious, and historically they were often not recognised, talked about or treated.

Teenagers may be moving into adulthood without many of the skills necessary to deal with these issues if we don’t manage them well at an early age.

It can be hard to distinguish between what is emotional turmoil and what warrants a mental health diagnosis in a young person.

We need to ensure GPs are trained to really understand the lives and moods of young people, as well as knowing what warning signs they should look out for. For some young people reassurance that this is within the range of normal human experience may be appropriate. For others, talking therapies may be the best option, as they have a proven track record of improving symptoms for those with mild and moderate depression.
In more serious cases, anti-depressants should be used together with talking therapies. Improving access to talking therapies is very important. Otherwise, if waiting times are too long, it’s more likely that a prescription will be given. If an antidepressant is required, fluoxetine should be the first option.”

via Swansea University – Medicalisation of young minds: new study reveals 28% rise in antidepressant prescribing amongst 6-18 year olds

The full paper, published in Psychological Medicine, “Recent trends in primary-care antidepressant prescribing to children and young people: an e-cohort study” by A. John, A. L. Marchant, D. L. Fone, J. I. McGregor, M. S. Dennis, J. O. A. Tan and K. Lloyd has been published Open Access and can be viewed here free of charge.

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

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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.

 

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