Dementia is a general term for a range of degenerative brain diseases mostly affecting the elderly. Most people are familiar with the term ‘Alzheimer’s disease’ as it’s the most common form of the condition, but there are other forms, too, and the symptoms can vary quite significantly. They can also vary considerably among people suffering from the same form of dementia. All forms, however, are alike in that they are incurable and progressive.
Offering care and support to someone suffering from this condition can be a long-term commitment fraught with difficulties and worry. As a carer, you find yourself in a position of responsibility that can be physically and mentally exhausting, and as the person is often a much-loved family member, such as a parent or spouse, it can be emotionally draining too.
Due to the incurable and progressive nature of dementia, most sufferers will eventually require professional residential care in a home or hospital, but before that time, you, as the primary carer, will need to provide an increasing amount of care and support to ensure that the person experiences the minimum possible hardship.
The more knowledgeable you are about dementia, the more effectively you can provide and arrange care and support, and not only for the person affected by this condition; you too will need support to help you manage. The good news is that there is a lot of help and support available.
The first signs of dementia usually present themselves in one or more of the following ways: uncharacteristic changes in behaviour, loss of memory, especially short-term memory, and periods of confusion. It’s important to note, however, that all such symptoms can also be caused by a range of temporary and curable physical ailments. So the first thing to do if the person in question is displaying signs normally associated with dementia is arrange for them to see their GP. After a preliminary examination, the GP will make the necessary arrangements with a hospital to determine if the problem really is dementia. It’s essential that you accompany the person on this and subsequent visits so that you can be fully aware of the arrangements being made and ensure their full cooperation.
If the diagnosis is positive, it can be devastating news for all concerned, but at least the worry caused by uncertainty can be put to rest. You can then begin to take positive steps and make arrangements to ensure that the person is given the necessary care and support. At this point, you will receive lots of professional advice and be put in touch with the relevant local Social Services Department where a wide range of support will be available ranging from domestic to personal help and even house modifications if necessary.
The person’s medical treatment will mainly consist of being put on a course of drugs designed to slow the progress of the disease and help them lead as normal a life as possible. Great strides have been made in this field of medicine, and the drugs given are, in most cases, highly effective. They must be taken as regularly as prescribed, however, so it’s important for you to supervise this and ensure that they are. Regular visits to your community’s ‘memory clinic’ will also be required to assess the rate of mental deterioration. These are informal and friendly sessions in which the person is asked a few questions such as, “Do you know which month it is now?” or be given mental tasks such as being asked to spell “world” backwards.
As you embark on your new role as a carer, you must keep in mind that the person you’re caring for is still the same person. They may speak and act differently and illogically in ways that you find frustrating and exasperating, but always keep in mind that those are symptoms of the disease. Don’t allow changes in their behaviour to cause changes in your behaviour. They can’t help how they speak and act; you can. Don’t rush to correct them or chastise them for every mistake. Don’t allow your frustrations to show through. Patience and understanding are qualities that you will need to foster to a high degree if you’re to be an effective and compassionate carer.
During the early stages, if the person lives alone, they may be able to continue to live alone and independently for quite some time. Health workers will be able to make regular visits and continually assess the person’s condition. You, and other friends and family members, should also make frequent visits. This is something of a balancing act, however. You don’t want to be overly intrusive, but you do need to be vigilant. You also need to consider such things as ‘power of attorney’, which enables you to make decisions on their behalf concerning their finances, will and other legal matters that they are no longer competent to handle by themselves.
When the condition worsens to the extent that the person is likely to become a danger to themselves, such as forgetting to finish cooking a meal that they’ve started, or setting off on a shopping errand and getting completely lost, they can no longer live alone. The immediate choices then are that they come to live with you or with another family member, or that you or someone goes to live with them so that they can be constantly supervised. If neither of those options are practical or possible, consider home care or residential care.
With home care, having a carer visit a person in their own home, you can rest assured that they’re in a completely safe and familiar environment with no lack of companionship and receiving professional care from staff well-trained in dementia care and support.