Contented Dementia articles

Lord Mccoll commends Contented Dementia

Lord McColl of Dulwich:

An exciting recent development in the management of dementia is the widespread adoption of the SPECAL method, which stands for specialised early care for Alzheimer’s. It is based at Burford in Oxfordshire and was developed by Penelope Garner. It has been validated in the past by the Royal College of Nursing and the Care Consortium of the Alzheimer’s Society. I am grateful to the clinical psychologist Oliver James for a tutorial on this subject. His book, Contented Dementia, describes the method which is now used all over the country, with carers and professionals now able to provide 24-hour well-being. It is the only management method which seems to confer contentment. A 2005 review published in the Journal of the American Medical Associationshows that none of the conventional methods is very helpful, which is presumably why there is such a heavy use of antipsychotic medication for these people.

There are now dozens of centres throughout the country which train carers in this SPECAL method. In cost-benefit terms it has massive implications: it reduces the need for emergency care, eliminates the necessity for antipsychotic medication and relieves the stress of carers. Without any impetus from Government, coming up from the grass roots, SPECAL is rapidly becoming the best accepted way of managing dementia.

Penny Garner, the founder, uses the analogy of a photograph album. If you think of the individual photographs as memories, then in a healthy individual the album is full. But in Alzheimer’s sufferers, many new experiences fail to get stored as photos in the album at all. The recent pages of a sufferer become increasingly blank, while the earlier ones remain intact. Suppose your husband tells you at breakfast to book some cinema tickets and you agree to do so. Unbeknown to you, your dementia means that this discussion has not been stored in the album. When asked about the tickets in the evening, you have no record of the original plan. You may get annoyed at being “wrongly” accused of having failed to carry it out. You become angry, then confused and scared.

Penny argues that the distress is compounded by well meaning attempts to remind the sufferer of what they have forgotten. Nellie, aged 81, was creating mayhem by wandering around the house and garden. In response, her fiercely loyal, military-trained husband, Richard, was providing detailed lists of what she had to do that day to “get the old girl sorted out”. This is the standard response, known as reality orientation. But it usually results in the sufferer thinking, “Why is this person constantly telling me my name? Are they mad?”. Instead, Penny Garner gets alongside the sufferer by finding out what used to be in their album. Extensive evidence from brain scans now proves that although short-term memory is damaged, the long-term memory is largely or completely intact. So Penny ferrets out from the family members the emotional places where they liked to be, stored in the long-term memory. Using this as a context, and taking the lead from the sufferer, Penny enables them to live almost all the time in a happy place. She “makes a present of the past”, as she puts it.

Gardening was Nellie’s happy context. With SPECAL’s help, Richard provides clues from her album which remind her of pruning flowers, so secateurs were placed all around the house. Soon she stopped drawing blanks; instead, she would wander around the house on the way to the garden to do some pruning. Mostly, she never got there, waylaid by discussions about the best implements for pruning, moving from one pair to the next. Living this happy way her mood improved dramatically. By finding benign, historical context, SPECAL creates a lifelong sense of well-being, rather than the rage and confusion that are triggered by the conventional responses to dementia. Oliver James states that dementia does not need to be hellish as it is possible to create a sense of well-being for the rest of the patient’s life. The person with dementia can no longer reliably store new facts but does continue to store feelings in the normal way.

The noble Baroness, Lady Gardner of Parkes, drew attention to the value of practical advice. Penny Garner found that the following advice is helpful. First, it is important to realise that people with dementia find it difficult and frustrating to answer questions. This is due to their impaired ability to remember. The solution therefore is to avoid asking them questions. Secondly, as their long-term memory is usually intact, one should concentrate on their long-term memory and celebrate it. Thirdly, always agree, never argue should be the policy at all costs. It does not really matter if they believe that a dead relative is alive or if they think that they are at the airport when they are actually shopping in the supermarket. Fourthly, when the short-term memory deteriorates further it is quite usual for the patient to ask the same question over and over again and it is very easy to become exasperated. The best thing is to be hesitant in answering the question, so when the repeated question is, “What day is it?”, one says: “Well, let’s see, um,” then look at the watch or the calendar and say, “it’s Wednesday”—actually it is Thursday. One does all this without appearing to be patronising in any way. We need to identify pleasurable themes from the past to help them make sense of the present. For example, it is possible to spend much of the day planning to watch a favourite old film. Routine, based on life well before the dementia developed, is very important and, if at all possible, once established should not be altered.

In conclusion, may I repeat that Alzheimer’s disease does not need to be hellish as it is possible to create a sense of well-being for the patient. The methods advocated by the charity, SPECAL, are much better than smothering the patients with excessive drugs.