Many caregivers in Asia can agree, it’s super hard to find resources and in some countries, it’s hard even to know where to start. When we go online there are so many websites and resources, it’s hard to even know where to start. It’s hard especially when a lot of information tends to be advertisements for private organisations promoting their services. When this post from Monica Cations post popped up on twitter, it was like, wow, what a great idea!
Let’s have one for countries in Asia. The list is below is one for Asia, and if you wish to view the full list of organisations, you can visit https://www.alz.co.uk/associations
Many diseases develop and become more likely as we age. Here are some of the most common conditions, and how you can reduce your risk of getting them as you clock over into a new decade.
In your 40s
Maintaining a healthy weight can reduce the risk of developing arthritis, coronary heart disease, and other common and related conditions, including back pain, type 2 diabetes, stroke, and many cancers. But almost one-third of Australians in their 40s are obese and one in five already have arthritis.
From the age of 45 (or 35 for Aboriginal and Torres Strait Islanders), heart health checks are recommended to assess risk factors and initiate a plan to improve the health of your heart. This may include changing your diet, reducing your alcohol intake, increasing your physical activity, and improving your well-being.
If you don’t already have symptoms of arthritis or if they’re mild, this decade is your chance to reduce your risk of the disease progressing. Focus on the manageable factors, like shedding excess weight, but also on improving muscle strength. This may also help to prevent or delay sarcopenia, which is the decline of skeletal muscle tissue with ageing, and back pain.
Most people will begin to experience age-related vision decline in their 40s, with difficulty seeing up close and trouble adjusting to lighting and glare. A baseline eye check is recommended at age 40.
In your 50s
In your 50s, major eye diseases become more common. Among Australians aged 55 and above, age-related macular degeneration, cataracts, diabetes-related eye diseases and glaucoma account for more than 80% of vision loss.
A series of health screenings are recommended when people turn 50. These preventive measures can help with the early detection of serious conditions and optimising your treatment choices and prognosis. Comprehensive eye assessments are recommended every one to two years to ensure warning signs are detected and vision can be saved.
National cancer screening programs for Australians aged 50 to 74, are available every two years for bowel and breast cancer.
To screen for bowel cancer, older Australians are sent a test in the post they can do at home. If the test is positive, the person is then usually sent for a colonoscopy, a procedure in which a camera and light look for abnormalities of the bowel.
In 2016, 8% of people screened had a positive test result. Of those who underwent a colonoscopy, 1 in 26 were diagnosed with confirmed or suspected bowel cancer and one in nine were diagnosed with adenomas. These are potential precursors to bowel cancer which can be removed to reduce your future risk.
To check for breast cancer, women are encouraged to participate in the national mammogram screening program. More than half (59%) of all breast cancers detected through the program are small (less than or equal to 15mm) and are easier to treat (and have better survival rates) than more advanced cancers.
If you’re a smoker, quitting is the best way to improve both your lung and heart health. Using evidence-based methods to quit with advice from a health professional or support service will greatly improve your chances of success.
The build-up of plaques in artery walls by fats, cholesterol and other substances (atherosclerosis) can happen from a younger age. But the hardening of these plaques and narrowing of arteries, which greatly increases the risk of heart disease and stroke, is most likely to occur from age 65 and above.
Exercise protects against atherosclerosis and research consistently shows any physical activity is better than nothing when it comes to heart health. If you’re not currently active, gradually build up to the recommended 30 minutes of moderate-intensity exercise on most, preferably all, days.
Other potentially modifiable risk factors for stroke include high blood pressure, a high-fat diet, alcohol consumption, and smoking.
Your 60s is also a common decade for surgeries, including joint replacements and cataract surgery. Joint replacements are typically very successful, but are not an appropriate solution for everyone and are not without risks. After a joint replacement, you’ll benefit from physiotherapy, exercise, and maintaining a healthy weight.
The treatment for cataracts is to surgically remove the cloudy lens. Cataract surgery is the most common elective surgery worldwide, with very low complication rates, and provides immediate restoration of lost vision.
In your 70s
Many of the conditions mentioned above are still common in this decade. It’s also a good time to consider your risk of falls. Four in ten people in their 70s will have a fall and it can lead to a cascade of fractures, hospitalisations, disability and injury.
Osteoporosis is one cause of falls. It occurs most commonly in post-menopausal women but almost one-quarter of people with osteoporosis are men. Osteoporosis is often known as a silent disease because there are usually no symptoms until a fracture occurs. Exercise and diet, including calcium and vitamin D, are important for bone health.
Older people are also vulnerable to mental health conditions because of a combination of reduced cognitive function, limitations in physical health, social isolation, loneliness, reduced independence, frailty, reduced mobility, disability, and living conditions.
Early diagnosis is important to effectively plan and initiate appropriate treatment options which help people live well with dementia. But dementia remains underdiagnosed.
Around 70% of Australians aged 85 and above have five or more chronic diseases and take multiple medications to manage these conditions. Effective medication management is critical for people living with multiple conditions because medications for one condition may exacerbate the symptoms of a different coexisting condition.
If you engage in cognitively stimulating activities in midlife, such as reading and playing games, you can reduce dementia risk by about 26 per cent, according to research. (Unsplash/Rawpixel), CC BY-SA
This number is growing: around 50 million people live with dementia today, and this number will rise to over 130 million worldwide by 2030.
You do not have to wait until you are 65 to take action. In the absence of treatment, we must think of ways to protect our brain health earlier. This month is Alzheimer’s Awareness month — what better time to learn how to reduce your risk of dementia, whatever your age?
There are three dementia risk factors that you can’t do anything about: age, sex and genetics. But a growing body of evidence is discovering early-life, mid-life and late-life contributors to dementia risk that we can do something about — either for our own or our children’s future brain health.
Before going any further, let’s clear up some common confusion between Alzheimer’s disease and dementia. Dementia is a term to describe the declines in cognitive abilities like memory, attention, language and problem-solving that are severe enough to affect a person’s everyday functioning. Dementia can be caused by a large range of diseases, but the most common is Alzheimer’s.
Poorer nutritional opportunities that often accompany low socioeconomic position can result in cardiovascular and metabolic conditions such as hypertension, high cholesterol and diabetes that are additional risk factors for dementia.
And low education reduces the opportunities to engage in a lifetime of intellectually stimulating occupations and leisure activities throughout life that build richer, more resilient neural networks.
Aerobic activity not only helps us to maintain a healthy weight and keep our blood pressure down, it also promotes the growth of new neurons, particularly in the hippocampus, the area of the brain most responsible for forming new memories.
Stay social and eat well in later years
While the influences of socioeconomic position and engagement in cognitive and physical activity remain important dementia risk factors in late life, loneliness and a lack of social support emerge as late life dementia risk factors.
You have heard that you are what you eat, right? It turns out that what we eat is important as a dementia risk factor too. Eating unrefined grains, fruit, vegetables, legumes, olive oil and fish, with low meat consumption — that is, a Mediterranean-style diet — has been linked to lower dementia rates.
Leading an engaged, healthy lifestyle is thought to increase “cognitive reserve” leading to greater brain resiliency such that people can maintain cognitive functioning in later life, despite the potential accumulation of Alzheimer’s pathology.
Thus, although all of these factors may not stop Alzheimer’s disease, they can allow people to live longer in good cognitive health. In my mind, that alone is worth a resolution to lead a healthier, more engaged lifestyle.
January 2019 | Global Brain Health Institute – My Brain Robbie animation campaign aims to help keep little brains healthy
My Brain Robbie animation campaign aims to help keep little brains healthy
My Brain Robbie, a fantastic new initiative to promote brain health among school going children, has been launched through the Pilot Awards for Global Brain Health Leaders, an initiative of the Global Brain Health Institute (GBHI), Alzheimer’s Association and Alzheimer’s Society UK. The project includes an animated video of a little brain which helps children learn about the eight steps to keeping our brains healthy, along with free educational resources for parents and teachers.
The My Brain Robbie campaign aims to fill an educational gap in the field of dementia prevention by generating a public health educational initiative for children aged 6 to 12 years. It also aims to increase global public awareness of the importance of brain health across the lifespan, rather than it being considered that brain protection strategies are an issue only for the elderly.
The video and materials bring together the latest scientific research in neurology and epidemiology which encourage early prevention and lifelong healthy lifestyles to mitigate the risk of developing chronic brain diseases including Alzheimer’s disease. Recent studies project that up to 30% of dementia may be preventable by targeting modifiable risk factors. The initiative was developed by researcher, doctor/physician and Atlantic Fellow for Equity in Brain Health at GBHI, Dr. Eleonore Bayen.
My Brain Robbie explains in child friendly language, the simple ways to keep our brain healthy using eight neuroprotective habits which connect with known modifiable risk factors for cognitive decline:
‘Learn’ touches on the role of education, cognitive stimulation and learning new things, in building cognitive reserve.
‘Be active’ describes the importance of physical activity and preventing sedentary lifestyles. Bad habits can develop as a result of spending too much time in front of electronic screens, a key issue for children, not to mention adults too!
‘Avoid head injuries’ looks at the prevention of traumatic brain injury.
‘Have a healthy diet’ refers to the “Mediterranean diet”. Another Atlantic Fellow, Claire McEvoy, among others has demonstrated the benefits of the ‘Mediterranean diet’ for brain health.
‘Avoid dangerous substances’ educates children in age-appropriate language about the dangers of tobacco and drug intake as well as excessive alcohol use.
‘Sleep well’ explains the importance of healthy sleep.
‘Take good care of your health’ looks at the importance of following medical care instructions for chronic diseases that can impact brain health, for example, hypertension.
‘Spend time with family and friends’ highlights the importance of social interaction for keeping our brains healthy.
My Brain Robbie, which was funded by GBHI and the Alzheimer’s Association, empowers children to maintain a healthy brain throughout their lives by providing them with simple public health messages. Dr Bayen hopes that, by providing information about brain health as part of early life education, this will create a shift in perceptions, beliefs, attitudes and stigma towards diseases of the brain, particularly dementia, in this generation and beyond.
Dr Bayen said: “This pilot arrives at a perfect time in history when the fight against dementia in high, low and middle income countries has become a top priority with an urgent need for innovative actions and “out of the box” thinking in prevention and care. While education at school offers us an amazing opportunity to fight stigma as well as social and health inequities, it appears that ‘dementia prevention and brain health at school’ is currently not being addressed and this would surely improve public awareness worldwide.”
She continued: “We hope that by teaching these important healthy brain habits to a younger generation that this may, in turn, educate upwards through the generations by motivating their parents and grandparents to learn more about the subject of brain health and dementia prevention. It may also, in turn, help to create a more supportive and inclusive living environment for people with neurocognitive disability and to create a feeling of optimism in a field of neurology where there have been limited therapeutic successes. Children are often wonderful teachers for their peers, parents, grandparents, and society at large.”
Dr Bayen worked in collaboration with a wide variety of experts such as neuroscientists, medical and health professionals, education specialists, teachers, parents, communication and design experts, as well as other Atlantic Fellows and faculty from GBHI.
The videos are currently available in English and French with plans to translate these into many more languages. My Brain Robbie welcomes interest from educators, health groups, parenting communities and others in sharing this initiative with as many children as possible.
She was inspired to develop the initiative during her Atlantic Fellowship with GBHI based at the University of California, San Francisco and Trinity College Dublin. GBHI focuses on protecting the world’s aging populations from threats to brain health. Collectively with partners, GBHI aims to reduce the scale and impact of dementia. The Pilot Awards for Global Brain Health Leaders is an initiative launched by GBHI and partners, the Alzheimer’s Association and the Alzheimer’s Society UK. The awards aim to support emerging leaders in brain health protection by funding small-scale innovative activities to delay, prevent, or mitigate the impact of dementia.
“Dr Bayen’s work is a wonderful example of GBHI’s approach to attaining a global impact on dementia prevention. It engages inter-professional contributions to development on a global scale. It also recognizes that brain protection is a life-long dialogue. Her innovative strategy of teaching children who will then engage in dialogue within households to ‘educate-up’ to parents and grandparents while reducing the stigma of dementia is timely.” said Victor Valcour, Executive Director of GBHI and the Atlantic Fellows for Equity in Brain Health program.
Dr Bayen said: “As a researcher and also a physician, I feel that my duty is not only to advance pure science but also to communicate it with others in creative ways. I hope that the My Brain Robbie campaign inspires children to feel responsible for their own brain health and to become aware of others’ brain health too.”
Dr Eleonore Bayen holds a Medical Degree with specialty training in Neurology and a PhD in Health Economics. She specializes in traumatic brain injury (TBI). She has advanced experience in architecting educational intervention programs about brain and disability for patients, family caregivers, and non-medical populations. Dr. Bayen was supported in her Atlantic Fellowship as a Fulbright grantee to the United States and was trained at the University of California, San Francisco site of GBHI in 2016. In this capacity, she was selected to be part of the first international class of the Atlantic Fellows who graduated from the Global Brain Health Institute in 2017. Bayen is currently an assistant professor in neuro-rehabilitation in Paris at Sorbonne University – La Pitié-Salpêtrière hospital.
Unlike the effervescent bubbles that stream to the top of champagne flutes on New Year’s Eve, what I call brain bubbles are far from celebratory. These bubbles are metaphorical rather than physical, and they distort the stream of reality processed by our brains. Like a real estate bubble that reflects an inflated perception of home values, a brain bubble twists your perception of the world around you. And when either of these bubbles bursts, the results can be devastating.
Problems arise when distorted information results in flawed decisions that negatively affect our lives. As a neuroscientist who’s worked closely with laboratory rats for over three decades, I’ve gleaned from them a few good strategies people can use to burst brain bubbles and enhance well-being in the year ahead. Rat brains are small but have the same general areas and neurochemicals we have, so these rodents are valuable laboratory models for human behavior.
Getting back down to Earth
Psychoactive drug use, aspects of privilege and poverty, psychiatric illness and, in some cases, religious and political beliefs can all create brain bubbles. Even daily excursions to the virtual world of apps, social media and cybergames sever our connections to concrete aspects of the real world and let distorting brain bubbles develop.
This is especially problematic for children’s brains that are still developing. An ongoing National Institutes of Health study suggests that two hours of screen time each day distorts language and thinking abilities in these junior digital users.
As our attention is hijacked by the closest screen while a Roomba cleans the floor and Alexa orders pizza to be delivered to the front door, what’s left for our brains to do? Sure, we likely face cognitive challenges at work each day, but human brains are built for sophisticated and complex activity – even though we’re often lulled into mindlessly scrolling through a virtual feed. In fact, a brain area often associated with reward and pleasure, the nucleus accumbens, is smaller in people who spend more time checking Facebook posts on their smartphones.
Obviously, some of these distortion-generating circumstances are out of our control. But a heightened awareness of our authentic world can move us toward a more reality-based, well-grounded brain – free of those brain bubbles.
The rats that my students and I train in our studies to physically work for coveted treats (Froot Loops cereal is a favorite) develop healthier emotional responses than the animals we call “trust-fund rats” because they’re merely given their sweet rewards. The harder-working rats have healthier stress hormone levels and engage in more sophisticated search strategies when they encounter a surprise challenge – such as when we move their expected Froot Loop rewards. They’re more persistent as they spend time trying to solve the problem, rather than quickly giving up and walking away.
So whereas one popular New Year’s resolution involves saving up to build financial capital, we can keep our brains in peak condition for the year ahead by building up experiential capital. Real-world experiences represent the best currency for our brain circuits, providing neural security for our future decisions in the coming year. Spending time engaged in hobbiessuch as knitting or gardening, for example, with complex movements and rich sensory experiences, provides a valuable yield for our brains.
Savor the anticipation
When the calendar flips to a new year, it’s common to reflect on the past and look to the future. According to the neuroscience literature, this anticipation could be one of the most pleasurable – and healthy – tasks our brains engage in all year long.
Dopamine is the poster neurotransmitter for the cognitive endeavor of anticipating. Traditionally known for its role in pleasure, this neurochemical system can be hijacked by psychoactive drugs such as cocaine that serve as potent creators of reality-distorting brain bubbles.
Rodent research provides fascinating insights here, however. Researchers use sophisticated techniques to measure dopamine activity as rats press laboratory levers that reward them with drugs. Surprisingly, this neurochemical system surges when the animal merely anticipates taking the drug as it approaches the drug lever, as well as when the drug is actually infused into the brain.
Anticipating a new start and a new year may be a scaled-down version of approaching the experimental lever for a hit of cocaine – a legal and healthy dopamine dose in this case. You can try to keep this emotional high going through the year by amping up the anticipation in your daily life: Focus more on delayed than immediate gratification. Buying and planning for experiences is more satisfying than material purchases. Mapping out a menu, shopping for ingredients and cooking a meal provides more dopamine time – and brain-engaging behaviors – than nuking a frozen meal and eating it three minutes later.
Seize the reins of your stress
Another way to enhance our well-being through the year is to gain some sense of control over the stress in our lives. Real-time and authentic interactions with the environment can help us gain a sense of control over the inevitable uncertainty and unpredictability we face each day.
I see evidence of this in the lab. When I furnish my rats’ housing with natural elements such as dirt, hollowed-out logs and rocks, they’re busier and less likely to sit around the edge of the cage than animals in boring empty cages. After building their experiential capital, these enriched rats have healthier stress and resilience hormone profiles and engage in bolder behaviors, such as diving to the bottom of swim tanks instead of staying on the top doing their best impression of a dog paddle. As I watch these animals in various tasks, they appear to be gaining control over the challenges they encounter.
Perhaps this is why retired U.S. four-star admiral William McRaven emphasized simple life strategies in his 2014 University of Texas commencement speech, declaring that “if you want to change your life and maybe the world, start off by making your bed.” Then, even if you have a terrible day, you will come home to a made bed, evidence that you had a positive impact in at least one area of your life that day.
Lessons from the laboratory rats also provide potential explanations for some of my own personal favorite New Year’s Day traditions – including the mundane tasks of cooking a familiar southern meal, cleaning my closet and watching HGTV’s Dream House giveaway with my family while we all declare what we would do if we won the beautiful house. Move in? Sell it? Make it an Airbnb rental?
Thinking like a neuroscientist, I know that cooking and cleaning are active endeavors with clear outcomes that allow me to gain a small sense of control, decreasing stress hormones. Playfully anticipating winning a new home taps into that feel-good dopamine system as we contemplate more serious options for the new year. And, perhaps the best neurochemical hit of all is the spike in oxytocin, the neurochemical involved in positive social connections, as I spend time with loved ones.
Although it’s common to turn to pharmaceuticals to lift our emotions and improve our mental health, the emotional benefits of many New Year’s traditions remind me that basic responses can serve as what I call “behaviorceuticals” that enhance well-being. New Year’s resolutions may take the form of New Year’s Rx’s as we consider healthy lifestyle choices for the coming year: Shrink those distorting brain bubbles and build realistic connections to enrich life’s simple pleasures.
Everyone has their own idea of what quality of care and quality of life in residential aged care may look like. The Conversation asked readers how they would want a loved one to be cared for in a residential aged care facility. What they said was similar to what surveys around the world have consistently found.
Characteristics that often appear as the basis for good quality of life include living in a home-like rather than an institutionalised environment, social connection and access to the outdoors. Good quality of care tends to focus on providing assistance that is timely and appropriate to individual needs.
A mature judgment to determine good quality requires us to recognise that many people have an instinctive and distressingly bleak view of ageing, disability, dementia and death. Some people express this as death being preferable to living in aged care, as the tweet below shows.
This doesn’t necessarily reflect an objective assessment of the actual care being delivered in residential facilities, but it does speak to the fear of losing independence, autonomy and identity.
In a survey of patients with serious illnesses hospitalised in the US, around 30% of respondents considered life in a nursing home to be a worse fate than death. Bowel and bladder incontinence and being confused all the time were two other states considered worse than death.
Aged care facilities will be the final residence for most before they die. This means the residents’ sense of futility and the notion one is simply waiting to die can and should be addressed.
Our reason for being is usually expressed through social connections. This a recurring theme for residents who define quality of care as whether or not residents have friendships and are allowed reciprocity with their caregivers.
A systematic review that drew together a number of studies of quality in aged care found residents were most concerned about the lack of individual autonomy and difficulty in forming relationships when in care.
The need for positive social connections for residents extends to the relationships between staff and families. Achieving this requires staff with a positive attitude who work to build trust and involve family in their loved one’s care. They must also engage on issues that have meaning to the individuals.
Good staff should be both technically proficient and, perhaps more importantly, good with people.
Idyllic, or the way it should be?
A home-like setting – which may include having a pet and enjoying time in nature, as the Tweet below describes – may seem idyllic. However, more contemporary models of care are moving towards smaller home-like environments that accommodate fewer people and are more like a household than a large institution.
The ability to relate and personalise care to a small group of 10-12 residents is surely easier than catering to 30-60 residents. Some studies in the US have shown residents in such smaller units have an enhanced quality of life that doesn’t compromise clinical care or running costs.
This cluster-style housing still has limitations that need to be addressed. These include selecting residents who are suitable together and catering for the changing clinical and care needs of each individual.
Pets and the outdoors
Research into the value of pets in aged care has largely focused on the benefits to people living with dementia. Introducing domestic animals, typically dogs, has been shown to have positive effects on social behaviours, physical activity and overall quality of life for residents.
Similarly, providing accommodation where the physical environment and building promote engagement in a range of indoor and outdoor activities, and allow for both private and community spaces, is associated with a better quality of life.
Another major determinant of quality of life in residential aged care is the quality of food. This becomes even more important as people age. Providing high-quality food and enriching meal times is more challenging as many diseases such as dementia and stroke affect older people’s dentition and swallowing.
Aged care services need proactive and innovative approaches to overcome these deficits and better promote general health.
A key feature often overlooked is the cultural significance of food. Providing traditional foods to residents strengthens their feeling of belonging and identity, helping them hold on to their cultural roots and enhance their quality of life.
Safety, dignity, respect and choice
While the focus is often on preventing abuse, neglect and restrictive practices in aged care, the absence of these harmful events doesn’t equate to a positive culture. Residents want and have a right to feel safe, valued, respected and able to express and exercise choice. Positive observation of these rights is essential for quality of life.
Clinical and personal care
Time is a factor in aged care, as staff often don’t have enough time to spend with each resident. A recent ABC Four Corners investigation into quality in aged care found personal care assistants had only six minutes to help residents shower and get dressed. No wonder, then, that staff often don’t have the personal time to be able to spend with residents who need life to be a little slower, as the Facebook comment below shows.
Clinical care is another important aspect of quality aged care. A resident cannot enjoy a good quality of life if their often multiple and chronic conditions such as diabetes, heart failure and arthritis are poorly managed by their doctors and nurses.
Residents in aged care are the same as those who live in the community. They are people with the same needs and wants. The only difference is they need the community to give the time, effort and thought to achieve a better life.
John Berry, a founder member of the Beastie Boys, has died of dementia at the age of 52. Berry’s father told Rolling Stone magazine that his son died from frontal lobe dementia, a rare form of dementia more properly referred to as fronto-temporal dementia.
Symptoms of fronto-temporal dementia usually begin in late middle age. Because the disease is not very well known, people with fronto-temporal dementia often have delays in receiving a diagnosis and may find the services they need are not available.
A tricky term
The terms used for this dementia are confusing. The changes in the brain are referred to as “fronto-temporal lobar degeneration”. These do not initially have any effect on people’s behaviour. Once signs and symptoms show up, it is possible to diagnose the condition as one of the “fronto-temporal dementias”.
When the frontal lobes – the parts of the brain lying immediately behind the forehead – are mainly affected, there are changes in behaviour or personality, resulting in “behavioural variant fronto-temporal dementia”. When the temporal lobes – parts of the brain near the temples – are mainly affected, dementia shows up through changes in language, of which there are two types: semantic dementia and progressive non-fluent aphasia. Whichever type of fronto-temporal dementia people have, they do not come to the doctor complaining of the sort of problems with memory loss that most of us think of as being signs of dementia.
We don’t know the specific symptoms that John Berry had as each case of fronto-temporal dementia is different, but about four to 15 people in every 100,000 have fronto-temporal dementias – and there are some common symptoms.
Losing the supervisor
There is huge variation in how fronto-temporal dementia progresses. But over time, it usually affects more and more aspects of thinking and functioning. It is a condition that shortens life, with people living about three to ten years after diagnosis.
So what happens during the earlier stages of behavioural variant fronto-temporal dementia – the type that is sited in the frontal lobes? One way of thinking of this area of the brain is to imagine it as the supervisor of complex activities and social behaviour. When the supervisor starts to do its job poorly, people develop trouble with complicated tasks. They may not be able to get started, so they may seem apathetic and lacking in energy. When they get started they may get stuck in a groove.
One carer we spoke with described how his brother would drive the car late into the night until it ran out of petrol even though he knew, on one level, that he ought to stop to fill up.
Sometimes people repeat an action over and over in exactly the same way, perhaps arranging objects very precisely or following a set daily routine according to a strict timetable. As the frontal lobe overseer loosens control, people often become uninhibited. They may become blunt and tactless. They may act on appetites and urges in ways that are quite out of character: touching people, swearing profusely when irritated and eating excessive amounts of sweet foods.
A particular difficulty for friends and family is that people with this dementia lose their ability to empathise. They may no longer offer comfort if someone is in tears and may seem very self-centred.
As not many people are familiar with the condition, it is often mistaken for other more common conditions. People may put the changes down to mid-life crisis, stress at work, depression or the menopause. It is possible that the condition is often misdiagnosed.
On average, it takes four years to diagnosis after symptom onset for younger people with dementia, twice as long as for those over 65 years of age, by which time, relationships may have broken down. People with fronto-temporal dementia are often at a stage of life where they still have children – and sometimes parents – who depend on them. So this, coupled with their increasing needs for support can be very stressful for everyone. Yet a recent national survey, currently in press, found there was a lack of provision of appropriate care across most of the country.
Biomedical research is making strides in identifying many of the proteins that accumulate as plaques in the brains of the people affected. The genetic aspects which affect about one in every five to ten cases are also now understood. However, with a cure still a long way off, research into how to support and assist people to manage their day-to-day lives is also very important. In our research we have taken detailed accounts of the experiences of those affected and we will be using these to develop and test ways of helping people and their families to manage and live better with the condition.