Around 24 million people worldwide are currently diagnosed with dementia, including 750,000 in the UK, and those numbers are expected to double in the next 20 years.
Once diagnosed, the prognosis is grim: dementia, in all its forms, is progressive and incurable. But getting that initial diagnosis right can be hit-and-miss, especially in its early stages, and doctors often get it wrong. In one study of 2000 people, the proportion of those diagnosed with dementia ranged from 3.1 per cent to 29.1 per cent, depending on the criteria the doctor used. When all six agreed measures were employed, just 20 people-or 1 per cent-had been correctly diagnosed. This suggests that dementia and AD are dramatically overdiagnosed in the early stages (N Engl J Med, 1997; 337: 1667-74).
Typical symptoms-such as forgetfulness-are also the result of a poor lifestyle that becomes more apparent as we age, and memory problems are made worse by a range of prescription and over-the-counter drugs, including those designed to treat dementia.
A diagnosis of dementia can trigger a prescription for a cholinesterase inhibitor-the standard drug for early-stage Alzheimer's-which causes side-effects that mimic the symptoms of dementia, which confirms the diagnosis that is, in fact, wrong.
The drug approach
Although dementia is "one of the greatest challenges society faces today", according to Sir Ian Carruthers, a senior manager with the UK's National Health Service (NHS), treatment is almost exclusively restricted to pharmaceutical drugs. At best, the drugs work for only a short period of time, if at all, and usually only while the disease's symptoms are mild. Antipsychotics-given to most dementia sufferers in care homes as a 'chemical cosh' to pacify them-kill around 1800 patients every year in the UK alone, and benefit only around 20 per cent of those who take them.
This concentration on a failing drug therapy is blocking the adoption of a range of alternative therapies that show more promise than drugs, say the leading health advisors. These drug alternatives include: Snoezelen, a multisensory stimulation therapy; cognitive behavioural therapy; bright-light therapy and music therapy.
Herbs from traditional Chinese medicine (TCM) have also been demonstrated to be as effective as a drug for treating dementia, and acupuncture and aromatherapy appear to benefit the dementia patient. Nutritional medicine has successfully slowed-and occasionally reversed-some cases (see Factfile D).
Most drug alternatives show some promise, but the plaints are always the same: more research is needed; and there is never any funding available to mount a large-scale trial to really find out.
WDDTY research has also discovered one innovative non-drug therapy-SPECAL (Specialized Early Care for Alzheimer's)-that perhaps offers the greatest hope to the dementia patient and family. It has a proven track record of helping thousands of dementia sufferers and their carers in the 20 years it has been practised; its creator, Penny Garner, says that the SPECAL approach invariably stops dementia from worsening, and has even reversed symptoms.
SPECAL, which operates as a charity, has had a positive evaluation by the Royal College of Nursing, and leading clinical psychologist Oliver James has championed it in his best-selling book Contented Dementia (Vermilion, 2008).
Only a few years ago, the then shadow Conservative Party was enthusiastic to see the therapy more widely used in Alzheimer care-and, yet, today the charity is struggling to survive, starved of vital funds and donations.
Its problems appear to stem from a very negative appraisal by the Alzheimer's Society, one of the UK's most influential voices in determining dementia research and care. The society has posted
a full-page condemnation of SPECAL on its website, even suggesting that its techniques are contrary to the ethos of the 2005 Mental Capacity Act.
It is an extraordinary volte-face for a society that, in 1997, described SPECAL as "a very impressive demonstration of person-centred care" and "a unique service with a model emphasis on highly individualised, person-centred care" (John J, Pride L. SPECAL Project Care Service Review, Care Consortium. Alzheimer's Disease Society, 1997). Its attitude is even more astonishing to understand, as SPECAL started life under the umbrella of the Society when Garner, then a Society helper, began introducing some of the techniques to dementia patients at her local community hospital.
The SPECAL method
SPECAL therapy offers carers a unique set of tools to help them to understand the perspective of the person with dementia. As a result, the dementia patient rarely-if ever-becomes agitated, stressed or violent. The lack of stress seems to slow the progress of the disease, says Garner.
SPECAL therapy grew out of Garner's experiences and observations over the years that she cared for her own mother, Dorothy, who suffered from dementia. At its heart is 'the photograph album', Garner's unique analogy of the way we all function in the world and make sense of it. At every moment, she says, our brain is taking a 'photograph' of its immediate world and the people in it. The photograph has two frames: facts that are associated with the photograph, and which help to make sense of it; and feelings, our emotional response to the image.
The frames also have one of three colours: green, for a normal situation that requires no action; red, for one that requires imme-diate action; and amber, when the action continues, but is less pressing and vital.
This process happens constantly and unconsciously, says Garner, but without it, we would not be able to make any sense of the world. Our photograph album is open on today's page-we usually need to make sense of the here-and-now-but we have stored all the old images, too, although we become less proficient at accessing these quickly as we age.
The brain of the dementia sufferer works in exactly the same way-except for one vital difference. Their photographs no longer have the 'facts frame' and, so, they cannot make sense of the world around them. However, the older pages of their photograph album, which were assembled before dementia started to affect their brain, are still there and, given time, can be accessed. This intuitive insight has since been confirmed by researchers using brain imaging techniques, who have discovered that dementia does not affect older memories (Brain, 2005; 128: 2006-15).
When the dementia patient is asked a question about something going on in the present moment, he cannot understand what is happening, so the photograph immediately changes to red-urgent action is required, but he is unable to act because there are no accompanying facts. A red frame photograph without facts leaves the dementia sufferer agitated and stressed, and may even make him aggressive as he cannot make anyone else understand.
From this, SPECAL therapy has three golden rules that the carer must follow:
1. Don't ask questions;
2. Learn from the dementia patient as the expert in his or her disability;
3. Always agree with everything they say, never interrupting them.
Essentially, the dementia patient cannot take in any new informa-tion, and so is trying to make sense of the world from old photographs and old 'fact frames' for the current image. The dementia patient doesn't forget; he never recorded the information in the first place.
While always following the three golden rules, the carer must also establish a system whereby old images are used effectively. This has three aspects: ascertaining the patient's Primary Theme, a significant aspect of their past such as their occupation or main interest; a Health Theme, such as a previous illness that will allow the patient to be cared for now; and Explanations, which seek to help the dementia patient understand the present through friends and situations of old.
Following the rules and the three-part system ensures that the dementia patient is kept in a state of well-being, usually for the remainder of his life, says Garner.
SPECAL techniques started to be used in the 11-bed community hospital in Burford, Oxfordshire, in 1990, and the hospital contin-ues to be the charity's base today. Since then, hundreds of carers have learned how to cope with their loved one's dementia by using SPECAL, and many profess-ionals have been trained in the techniques, and have introduced them into their own care homes and hospitals.
As the Royal College of Nursing researchers concluded after appraising the method: "The SPECAL approach has the potential to positively influence dementia care on a wider scale through replication" (Aging Ment Health, 2001; 5: 63-72). Research psychologist Margaret Godel says that SPECAL may be "unique in offering a proactive, comprehensive service" (J Dementia Care, 2000; Sept/Oct: 20-4).
The celebrated clinical psychologist Oliver James, who devoted his book, Contented Dementia, to the SPECAL method, said that it is the only therapy that can "legitimately offer a real chance
of sustained well-being [for the dementia sufferer]".
Most of the criticism of SPECAL has come from the Alzheimer's Society, which 14 years ago had highly praised it. Until 2004, it was seen as one of the therapies that the society supported. Today, its stance-outlined on a page of its main website (www.alzheimers. org.uk)-is dramatically different, and suggests that the therapy's approach goes against the ethos of the Mental Capacity Act.
"SPECAL supports the view that it is acceptable in many instances to lie to people with dementia and to move away from offering them an effective range of choices," the statement reads. Overall, it "deceives" people who have dementia.
In response, SPECAL says that its methods allow the patient to retain agency by supporting their reality. It is also unacceptable to expect the dementia sufferer to come to terms with a reality he does not understand.
The Alzheimer's Society stance has been damaging to SPECAL. It has affected its take-up around the UK-possibly influencing the government as well-and has made it difficult to attract funds and donations even to cover the basic running and administrative costs.
Garner and her small team at SPECAL say they welcome a thorough and long-term review of the therapy but, again, funds need to be made available for that to happen. She estimates that the charity can survive for three more years before the last of the funding dries up, and it will be forced to close.
- If you would like to know more about SPECAL-or to make a donation-write to: The SPECAL Centre, Sheep Street, Burford, OX18 4LS, or e-mail email@example.com. Tel: 01993 822 129; www.specal.co.uk.
Factfile A: Understanding dementia's causes
Medicine is uncertain about the cause(s) of dementia, other than that it appears to occur more as we age.
Alzheimer's disease (AD) is the most common form of dementia, and is a disease that changes the brain's structure and kills nerve cells. These cells depend on acetylcholine as a chemical messenger, or neurotransmitter. An enzyme called 'acetylcholinesterase' breaks down the chemical and, as a result, stops the cells from communicating with each other.
This theory supports the almost exclusively drugs approach to the disease, as chemical locks with chemical in an endeavour to reverse the symptoms.
Vascular dementia is another form of dementia, caused by blockages to blood vessels in the brain, and is also known as 'multi-infarct dementia'. Dementia with Lewy bodies is a rarer type, characterized by Lewy bodies, which are caused by an abnormal build-up of protein in the brain.
But the triggers for these processes remain elusive. New research suggests an association with atrial fibrillation, or irregular heart beats. Those who have this form of heart disease are up to 50 per cent more likely to suffer from dementia, researchers have found (J Am Geriatr Soc, 2011; doi: 10.1111/j.1532-5415.2011. 03508.x). Another recent research project concluded that Alzheimer's may be the result of a profusion of blood vessels-the very opposite of the cell-death theory (PLoS ONE, 2011; 6: e23789; DOI: 10.1371/journal. pone.0023789).
Earlier research agrees that chronic stress and depression play an important role in the development of dementia. One Russian study has concluded that chronic stress plays a vital role in the development of Alzheimer's disease in particular (Vestn Ross Akad Med Nauk, 1999; 1: 39-46). A separate study of 823 dementia patients discovered that 57 per cent of those with Alzheimer's and 86 per cent of those with vascular dementia also suffered from depression (Int J Geriatr Psychiatry, 2006; 21: 246-51).
Aluminium in the water supply has also been suspected to be a cause (Aging [Milano], 2001; 13: 143-62).
A sociodemographic profile of the typical dementia patient suggests someone who is more likely to be female, aged 80 years or older, poorly educated, a smoker and a frequent user of pharmaceutical drugs, and who has suffered a head injury and been exposed to toxins in the work environment.
Factfile B: The drugs for Alzheimer's
Medicine has two drug families at its disposal for treating Alzheimer's disease, the main cause of dementia.
The cholinesterase inhibitors-for example, Aricept (donepezil hydrochloride), Exelon (rivastigmine) and Reminyl (galantamine)-are designed for people with mild-to-moderate Alzheimer's, but these drugs have had limited success in improving motivation, anxiety, confidence, memory and thinking. According to a survey conducted by the Alzheimer's Society, around 40 per cent of patients derive some benefit from the drugs, although the improvement in symptoms lasts for only up to a year at most (www.alzheimers.org.uk). Overall, say researchers, the cholinesterase inhibitors achieve only a "modest and transient benefit" (Prescrire Int, 2011; 20: 95).
New research suggests that these meagre benefits could be far outweighed by the risks that also come with cholinesterase inhibitors. UK researchers at the University of East Anglia have discovered that the anticholinergics cause premature death in the elderly, and the risk increases with the number of anticholinergics the patient takes. Although Alzheimer drugs are specifically designed as cholinesterase inhibitors, many other drugs-including over-the-counter preparations such as codeine-also share the same qualities (J Am Geriatr Soc, 2011; 59: 1477-83).
Another type of Alzheimer's drug, the NMDA (N-methyl-d-aspartate) receptor antagonists, focuses on a different chemical messenger-glutamate. Excessive amounts of glutamate are released when brain cells are damaged and this, in turn, causes further damage. The NMDA receptor antagonists are designed to block the production of glutamate and, so, slow further damage to the brain.
Ebixa (memantine) is the first NMDA receptor antagonist to be approved as a therapy for moderate-to-severe Alzheimer's. Although Ebixa has been championed as the great new hope for Alzheimer's patients, the research doesn't support the hype. In a meta-analysis of three trials that tested the drug on a total of 1128 patients with mild-to-moderate AD, the researchers found that the benefits were no better than a placebo as a treatment for mild symptoms, and only marginally better for more severe symptoms
(Arch Neurol, 2011; 68: 991-8).
Factfile C: The chemical cosh
Around 60 per cent of elderly residents in care homes have dementia, and many of them are given a powerful antipsychotic drug as a 'chemical cosh' to make them docile. As such, the drugs are for the benefit of the carers, not the patients.
Professor Sube Banerjee, clinical director at the South London & Maudsley NHS Foundation Trust, has produced a report for the UK's National Health Service that is so critical of the practice that it has changed NHS policy: as a result, antipsychotic use will be restricted, and possibly even phased out, in the UK in the coming year. By next April (2012), doctors must have reviewed all antipsychotic prescriptions, and hospitals and care homes will need to demonstrate that they are looking at alternatives-or their funding may be affected.
In his report Time for Action: The Use of Antipsychotic Medication for People with Dementia, Professor Banerjee estimates that around 180,000 people with dementia in the UK are given an antipsychotic, killing around 1800 patients, and causing permanent brain and heart damage in a further 1620 patients, every year. Only 20 per cent of these people derive any benefit from the drugs.
The focus on drug therapy means that alternative therapies that are more beneficial are being ignored. "There is an unambiguous case for a substantial reduction in their [antipsychotics] use alongside the wider adoption of alternative interventions which we know can help to maximise the quality of life for people with dementia and their carers," Professor Banerjee writes.
Factfile D: The non-drug alternatives
If drugs don't work, then what does? There is a wide range of non-drug alternatives that appear to work better, although the evidence is often based on only small numbers of patients. Unfortunately, any non-drug approach finds it almost impossible to attract the funding needed to carry out large-scale research projects.
- Ginkgo biloba. This herb is a mainstay of traditional Chinese medicine (TCM) for the treatment of memory loss, confusion and anxiety. It has been well researched and, while several recent studies have found that any benefits are no better than a placebo, one produced significant benefits for dementia patients, in whom cognition, mood and depression all were improved (Cochrane Database Syst Rev, 2009; 1: CD003120).
- Ginseng. This is the world's best-selling herb, and it is associated with improving cognitive performance. Nine double-blind placebo-controlled trials found that it improved cognitive function, behaviour and quality of life in some cases (Cochrane Database Syst Rev, 2010; 12: CD007769).
- Acupuncture-and especially electroacupuncture-appears to have a positive effect on the brain processes associated with dementia. One study showed very positive effects-but this was in laboratory mice, so the results may not be replicated in humans (Zhen Ci Yan Jiu, 2011; 36: 95-100).
- B vitamins. Vitamins B1 (thiamine), B3 (niacin) and B12 are all vital for healthy cognitive functioning. Nutritionist Dr Melvyn Werbach says that dementia is a classic case of niacin deficiency, and he has successfully reversed some cases of dementia when niacin levels were normalized. Similarly, B1-dependent enzymes essential for brain functioning are often impaired in Alzheimer's patients, and small, but significant, improvements in brain functioning have been witnessed in Alzheimer's patients given just 3 g of B1 daily (J Geriatr Psychiatry Neurol, 1993; 6: 222-9).
- Vitamin E. The antioxidant vitamins-A, C and E-are powerful preventatives of dementia, but vitamin E in particular appears to slow the progression of Alzheimer's disease. Patients given 2000 IU of the vitamin every day slowed the development of the disease and improved their day-to-day functioning (N Engl J Med, 1997; 336: 1216-22).
- Snoezelen. This multisensory therapy stimulates sight, hearing, touch, taste and smell by using lighting effects, tactile surfaces, meditative music and essential oils. It began as an aid to overcome learning disabilities, but has recently been used to treat dementia. Researchers have found it difficult to come up with a definitive view of its effectiveness because practitioners sometimes use only parts of the entire system. However, two studies have shown that it helps to improve many of the behavioural problems associated with dementia, including apathy, restlessness, disturbed behaviour and repetitive actions (Cochrane Database Syst Rev, 2002; 4: CD003152).
- Music therapy. A review of 33 studies of various non-drug therapies for dementia found that music therapy was the most effective, both for the patients and their carers. Hand massage, touch therapy and physical exercise were also beneficial (Int J Geriatr Psychiatry, 2010; 25: 756-63).
- Light therapy. Canadian researchers who accessed the Cochrane Dementia and Cognitive Improvement Group's Specialized Register found that light therapy shows promise, although there are not enough good-quality studies to make a definitive statement (Cochrane Database Syst Rev, 2009; 4: CD003946).
- Aromatherapy. One study showed that this therapy had a "significant" beneficial effect in treating dementia patients with agitation and neuropsychiatric symptoms (Cochrane Database Syst Rev, 2009; 3: CD003150).
- Massage/touch therapy. This form of therapy offers a genuine alternative to drugs for dementia. It counteracts anxiety, agitated behaviour and depression, and it might even slow cognitive decline (Cochrane Database Syst Rev, 2006; 4: CD004989).
WDDTY 22 no 7, October 2011