Category Archives: Dementia & Culture
How to help people with dementia retain the power of choice
Deterioration in the ability to produce complex speech or understand what people are asking, can make it difficult for people with dementia to make choices in conventional ways. It can be simple things like deciding which clothes to wear, or what to have for dinner. But when a person is in the more advanced stages of dementia, and may not be able to speak at all, it can be difficult for those caring for them to work out what their preferences would be.
To help the estimated 280,000 people with dementia who are living in UK care homes, family members are often asked what their loved ones would prefer and notes are made by staff. But we know that people’s preferences can change, sometimes on a daily basis, and are hard to predict even by people who know them really well.
Take the example of Mrs Jones. Care workers know that she likes both tea and coffee, but that she prefers tea. If Mrs Jones finds it difficult to tell them what she wants, how will they know that today is the day that Mrs Jones fancies a coffee?
Behavioural researchers have found that one way to figure out what a person would like is to measure how they respond when provided with different options at the same time. For example, to find out whether a person prefers a biscuit or a scone, the two treats are presented together for the person to choose.
As the person making the choice is unable to speak, physical behaviours such as reaching, touching, and picking up the item are watched to find out which they would like. Studies which use this method are usually done with people with dementia in their care home, and tailored to the individual taking part. While the researchers can find out what works best, it also means that people with dementia benefit directly from taking part in the study. Staff are also shown how to find out preferences – leading to immediate improvements in care.
Though it seems like a simple thing to put into practice, this “choice” method is not currently part of the UK care system. However, we have been testing to see whether it could be used in all care homes, to give everyone with dementia more choice in a place where it has traditionally been limited. By observing what people do rather than what they say, care staff can get a more objective idea of what people like, measure their preferences daily, track how they change, and – most importantly – give people with dementia and communication issues more of a voice in their daily lives.
Our work forms part of the first UK project of its kind in the field of behavioural gerontology. The preferences research is part of a series of studies all focused on using behaviour analysis to help improve the quality of life of people with dementia. In addition, students on Bangor University’s applied behaviour analysis programme are trained to specialise in this approach with older adults.
Though the project itself is due to go on for another year, we have already confirmed previous findings from US-based care home studies which showed that people with dementia prefer activities over food items when given a choice between them. For example, we found that people chose activities such as jigsaws, crosswords, and crochet over treats such as custard tarts and pork pies.
This might be because one risk for people with dementia in long-term care is that they can spend a lot of time unengaged. It can be difficult to find lots of meaningful activities for care settings, and opportunities for conversation can be reduced. So activities become more valuable because they give people something to do and to talk about with other people, while food might become less valuable due to sensory changes associated with dementia such as changes in ability to taste and swallow.
Putting this into practice, we now know that if a person with dementia is to be given food and activity choices, they should be done separately – rather than at the same time, like the biscuit and scone example – as preference for taking part in an activity might overshadow a food choice. In the long run, this means that staff don’t learn what people’s food preferences are, too.
For the next stage of our research, we are going to work with people with developmental disabilities (for example, Down Syndrome) who develop dementia. People with developmental disabilities often develop dementia at a younger age, and are more likely to develop it than those who do not have a developmental disability. They are often diagnosed late, too, due to “diagnostic overshadowing”, where changes in behaviour are attributed to their disability rather than dementia.
Previous research has found that people with developmental disabilities will often choose food over activities when a choice between the two is offered (the opposite of people with dementia). However, no one has yet looked at whether this preference shifts when people with developmental disabilities develop dementia. If we know how preferences change, we can ensure that care settings tailor their support.
We all value having choices, and our work is focused on evaluating and developing ways to ensure that people with dementia and developmental disabilities continue to be offered choices, even in the smallest of ways.
Up to 80 per cent of community care for older adults is provided by unpaid informal caregivers. In the absence of government supports, many of them struggle with exhaustion, stress and depression.
When Brenda retired from paid work, it was like a care-giving tsunami.
Her dad and stepmom moved in with her, her husband had a heart attack and she became a grandma — all within six months.
Brenda is one of 8.1 million Canadians who have taken on challenging unpaid roles — as informal caregivers for people living with physical or cognitive conditions or chronic life-limiting illnesses.
Her stress increased as her parents started to deteriorate physically and mentally. She tried to stay ahead of the ever-changing situation, but became exhausted after her dad started waking in the middle of the night and getting dressed to go out.
She looked on the internet for support in her care-giving role.
As co-scientific directors of the Aging, Community and Health Research Unit at McMaster University, we are working together with older adults with multiple conditions and caregivers like Brenda to promote optimal aging at home.
It also suggests that web-based interventions may help reduce depressive symptoms, anxiety and stress or distress for these caregivers.
Who cares for the caregivers?
Older adults with chronic conditions rely heavily on their family caregivers to coordinate their care, monitor medication and accompany them to appointments.
Increasingly, these older adults have multiple chronic conditions (MCC), such as dementia and stroke, not just one. And as this prevalence of multiple conditions increases worldwide, it’s associated with poor health and higher health-care use and costs.
Caregivers report that they do not receive adequate home care or respite services to support them in their roles. There are, for instance, long wait lists for long-term care beds.
While caregiving is rewarding, many informal caregivers experience stress and anxiety leading to their own poor mental and physical health.
Informal caregivers feel overwhelmed with multiple requests for their time and frustrated when they can’t plan too far in advance.
“I felt like I was spending a lot of time waiting. Waiting for people to get ready. Waiting for people to get back to me. Waiting at appointments,” said Brenda.
Some reach a crisis point and leave their loved ones in the hospital emergency room because they are unable to continue in their caregiving role. This contributes to an already overburdened acute-care system.
Web-based supports can help
We conducted a systematic review and meta-analysis that examined the impact of different types of internet-based interventions on caregiver mental health outcomes.
One example of such a web-based support is My Tools 4 Care, developed by our colleague Dr. Wendy Duggleby at the University of Alberta and her team.
We found evidence that internet-based interventions had a positive effect on reducing depressive symptoms, stress, distress and anxiety in caregivers of adults with a chronic condition.
The most effective category of online support was information and/or education with or without professional psychological support. Information provided together with combined peer and professional psychological support was also effective, to a lesser extent.
Caregivers in our study made recommendations to improve the content and format of online resources. Suggestions included: Providing personalized information about local resources; sharing practical caregiving tips and strategies; creating opportunities to connect online with other caregivers; and having user-friendly features that are easy to navigate.
Nova Scotia leads the way
Caregiving comes with costs to the caregivers — to their health and to their finances.
Half of caregivers are between 45-65 years of age, in the peak of their earning years. They often take time off work to take their loved ones to appointments, and some must leave work early when the health of their loved one worsens. Out-of-pocket expenses for equipment, medications and parking can also be expensive.
Research shows that caregivers spent $12.6 million in one year on expenses related to their roles.
Nova Scotia is the only province in Canada that has a monthly income or allowance for caregivers, known as the Caregiver Benefit Program. Financial assistance from the government for caregivers in other parts of Canada mainly take the form of federal tax credits and insurance benefits.
And yet caregivers make vitally important but often unrecognized contributions to our society. It is estimated that they contribute $25 billion in unpaid labour.
Change is urgently needed to better support our caregivers.
Jenny Ploeg, Professor, School of Nursing, McMaster University and Maureen Markle-Reid, Associate Professor and Canada Research Chair in Person Centred Interventions for Older Adults with Multimorbidity and their Caregivers, School of Nursing, McMaster University
8 Residents in a care home and it costs no more than a regular care home in Switzerland. Watch the videos to find out more. Please note that in the first video the language does not adhere to dementia language guidelines.
Intergenerational care programs encourage relationship building between generations.
What happens when you bring a group of older residents to mix with young children in childcare? Clapping hands and singing songs is just one way they spend the morning together. These interactions are made possible by intergenerational care programs that have gained popularity in Australia in recent years.
Intergenerational care programs provide older adults and children aged three to five with care and social support in the same setting, for short periods of time. This has mutual benefits.
The widespread implementation of intergenerational care programs has the potential to solve many of today’s economic challenges associated with child and aged care, while enhancing the educational and social benefits in encouraging relationship building between generations.
Intergenerational care programs in Australia
Although intergenerational care programs are popular in the US and UK, they’re in their infancy in Australia.
Given changing economic, demographic and social pressures in Australia, there’s an increased need for quality and cost-effective care arrangements for both older people and young children.
There’s an anticipated rise in demand for formal care services associated with an ageing population in Australia. This is further compounded by an increase in people not having children, shifts in perceptions of family obligations for caring, rising divorce rates and rising female employment rates.
Accompanying the unprecedented demand for formal aged care services is the limited supply of such care. Finding appropriate care for both older people and young children in Australia is often difficult and unsuitable for the person in need of care or their carer.
The increase in demand for formal care services and the shortage of supply of such care highlights the need for alternative models. This includes models such as intergenerational care. But current intergenerational programs in Australia tend to operate in residential aged care facilities, lack a formalised program based on educational teaching strategies, and don’t keep track of or evaluate participant outcomes.
The Griffith University Intergenerational Care Project
The Griffith University Intergenerational Care Project focuses on trialling two models of care:
- a shared campus model where an aged care centre is located in the same place as a childcare centre
- a visiting campus model where childcare and aged care centres are located separately and one group travels to visit the other.
The psychological and social benefits of intergenerational care programs are well recognised. Griffith University’s Intergenerational Care Project is investigating the educational, workforce and economic benefits intergenerational care programs can bring to Australia.
This research is now well underway and is being conducted across four locations within Queensland and NSW. It’s conducted with older adults living with dementia and children aged three to five years.
In this program, older people and children meet for one hour each week over 16 weeks. They partake in shared activities designed to enhance engagement between generations.
Preliminary results suggest the reception of the program has been positive. Both younger and older participants expressed excitement and joy at being able to interact with each other.
Benefits of intergenerational care
Intergenerational care programs give children the opportunity to learn from and connect with an older generation, improve children’s behaviour and attitude towards older people, and enhance the overall well-being of both young and old participants.
For older participants, intergenerational care programs allow them to pass on their knowledge and interact with young children in a meaningful way. As a result, they feel an improved sense of life meaning and enhanced self-worth.
Community perceptions of older adults and ageing also tend to shift from negative to positive. This is especially important because older people want to be treated as valued members in society.
Intergenerational care programs enhance the quality of relationships between ageing people and children, and challenge ageist stereotypes.
Intergenerational care programs create a strong opportunity to address ageism in society from an early age and challenge people’s assumptions about the contributions of people living with dementia or experiencing other forms of cognitive decline.
This is particularly important in Australia. It’s projected by 2050 about one million people will be living with a dementia-related illness. This represents an increase of 254% since 2011.
Delivering intergenerational programs in one location is also attractive because of anticipated cost savings. Both aged care and childcare organisations can decrease total running costs by sharing resources such as skilled labour, learning materials, and buildings.
Our preliminary workforce interview findings suggest intergenerational care is a career path that interests staff. It also suggests creating a training qualification to enable this career path may address workforce shortages in both child care and aged care.
Intergenerational care programs offer an effective alternative model of care in Australia in the face of increasing economic, demographic and social pressures. An extensive rollout of such programs has the potential to give families access to more, higher quality childcare, and helps older people feel like valued members of society.
Anneke Fitzgerald, Professor, Griffith University; Katrina Radford, Lecturer, Deputy Director Research IBAS, Griffith University, and Lalitha Kirsnan, Marketing and Communications Officer, Intergenerational Care Project, Griffith University
Humans have big brains and our frontal lobes, just behind the forehead, are particularly huge. Injuries to this part of the brain often happen after blows to the head or a stroke. Paradoxically, some people with frontal lobe injuries can seem unaffected – until they’ve been carefully evaluated.
The frontal lobes are sometimes described as the executives of the brain, or conductors of the orchestra. Among other things, they control and organise our thinking and decision-making processes. You rely on your frontal lobes when you do things like make plans, switch from one activity to another, or resist temptation.
Some people with frontal lobe injuries seem completely normal in short one-to-one conversations, but they actually have great difficulty with everyday tasks, such as cooking, organising their paperwork or remembering to take medication. This is called the frontal lobe paradox because, even though these people seem unimpaired when assessed, they have significant difficulties in everyday life.
Without specialist expertise in acquired brain injuries, it can be almost impossible to spot frontal lobe paradox because, in many cases, people will still be able to speak normally and seem remarkably unimpaired. They may be unaware of their difficulties and deny that they need any help or support.
People affected by the condition are not lying when they say they don’t need help or support. Instead, they may lack knowledge of their own condition because areas of the frontal lobes that are responsible for self-monitoring and developing insight have been affected by their brain damage.
A second reason for the frontal lobe paradox is that the skills needed for an assessment interview are different from those needed in everyday life. The structure and routine of an environment, such as a rehabilitation ward, can, in effect, play the role of someone’s frontal lobes. This can mask the difficulties people experience in less structured, open-ended environments. For this reason, a person’s level of ability needs to be assessed in a situation that resembles everyday life. A seemingly simple task, such as going shopping, can reveal difficulties in people who appear unimpaired on standard tests of memory and attention, and have normal intelligence.
Lack of specialist training
Neuroscientists and doctors have known about the frontal lobe paradox for at least 50 years, but it is not always understood by non-specialists. This situation can lead to people not receiving help they desperately need.
For example, in England and Wales, social workers and care managers are usually responsible for deciding whether a person has the capacity (under the Mental Capacity Act 2005) to decline support or care. These are hardworking professionals who are motivated to act in the best interests of those under their care, but many receive little or no specialist training in brain injury.
These professionals tend to base their decision about a person’s mental capacity on a short face-to-face interview. This is exactly the situation that can lead to people with frontal lobe damage being denied the care that they need.
The assessment provides the support needed for a person to sound competent and able, but only for the duration of the assessment. In one example, a woman persuaded a series of professionals that she could safely live alone after a significant brain injury. In reality, she could not make meals for herself or remember to take her lifesaving medication. Sadly, she died at home shortly afterwards.
We don’t know exactly how common the condition is, but the frontal lobe paradox is probably found in a much higher number of people than you might first imagine. As well as those who have suffered blows to the head and strokes, it can affect people with certain infections, some forms of dementia and even poorly controlled diabetes.
It is vital that social workers and care managers are trained on brain injury to protect the interests of people with frontal lobe injuries. People with these injuries are in particular need of support, but they are often the least likely to receive it.
July 2018 | United Kingdom – Just ten minutes of social interaction a day improves wellbeing in dementia care
An e-learning programme that trains care home staff to engage in meaningful social interaction with people who have dementia improves wellbeing and has sustained benefits.
The average person with dementia in a care home experiences just two minutes of social interaction each day, researchers found. They also showed that out of 170 available training programmes for nursing home staff, only three are evidence-based – none of which improve quality of life.
The Wellbeing and Health for people with Dementia (WHELD) programme trained care home staff to increase social interaction from two minutes a day to ten, combined with a programme of personalised care. It involves simple measures such as talking to residents about their interests and involving them in decisions around their care.
The Improving Staff Attitudes and Care for People with Dementia e-Learning (tEACH) study, conducted by the University of Exeter Medical School and King’s College London in partnership with the Social Care Institute for Excellence (SCIE), was presented at the Alzheimer’s Association International Conference 2018. The study involved 280 residents and care staff in 24 care homes over nine months.
Carers took part in an e-learning programme based on the WHELD training, with or without Skype supervision. They compared outcomes to usual care. Both treatment arms improved resident wellbeing and staff attitudes to person-centred care. The Skype supported arm continued to deliver improved resident wellbeing four months after the trial was completed.
Joanne McDermid, of King’s College London, who presented the research, said: “Care home staff are under a lot of pressure – it’s a really tough job. It’s a challenging environment for both residents living with dementia and staff. Our programme moved care staff to see dementia through the eyes of those who are living it. We found a simple approach, delivered as e-learning, improves staff attitudes to care and residents’ wellbeing, ultimately improving lives for people with dementia.
“In a traditionally task -focussed work environment, our programme reminds us of the human side; of the full life experience of those living with dementia in care.”
Professor Clive Ballard, of the University of Exeter Medical School, who led the research, said: “Just take a moment to imagine life with just two minutes of social interaction each day. To accept this is discrimination against people with dementia. We urgently need to do better. Most care home training programmes are not evidence-based. We know our programme works over the long term, and we now know it can be delivered remotely. We now need to roll this out to care homes.”
Watch carers talk about their experience of the WHELD training. To find out more about our world-leading dementia research, follow #ExeterDementia and @Clive_Ballard on Twitter, or visit the Exeter Dementia website.