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The long goodbye: caring for someone with Alzheimer’s disease

The long goodbye: caring for someone with Alzheimer’s disease

A recent survey carried out by The Alzheimer’s Society claimed that more than 750,000 people are currently suffering from Alzheimer’s and related dementia issues. An alarming statistic, which represents extremely difficult living conditions for those affected and their families.

Alzheimer’s disease is a progressive brain disorder that slowly erodes a persons’ memory, ability to learn, reason, make judgements, communicate and carry out daily routines. People with Alzheimer’s disease can also experience personality changes and uncharacteristic behaviour, ranging from anxiety and agitation right up to delusions and hallucinations.

There is currently no cure for Alzheimer’s, however research is ongoing into new treatments and approaches to handling its symptoms and consequences. Research has also revealed that effective care and support can vastly improve quality of life for patients and their families over the course of the disease, from diagnosis to end of life.

Looking after someone affected by Alzheimer’s disease or dementia is tough. No two people experience the condition in the same way. So, there’s not one single ‘text-book approach’ to caring for them. Responsibilities can vary from managing finances to overseeing medication; handling changes in behaviour, to helping with morning routines, such as dressing and getting washed. This can be difficult, time-consuming and very stressful. Care givers must look after their own well-being throughout the process too, for the benefit of everyone concerned.

It is important to stay informed about the signs and symptoms of Alzheimer’s disease and dementia, so that you can keep one step ahead of the patient and the likely progression of their condition. This will help with the emotional side of things too: forewarned is forearmed. Get the patient involved in their own care as much as you can, to help share the burden. For example, involve them in designing their morning and bedtime routines and make sure they are comfortable with any medication or therapy courses prescribed. Obviously, this will not be possible in more severe cases, but it can help patients in the early stages come to terms with what is happening to them if they can retain some control for as long as possible.

Set up memory aides and other strategies to help the patient cope with daily tasks, and to help them remember their past life and those who are or have been close to them. Timetables and picture charts can help with routines, and photo albums, voice recordings and favourite music can help keep memories alive. Remain flexible and willing to adapt as the condition progresses. Use your imagination to come up with new coping strategies if existing ones start to lose impact. Keep an open mind. If the person suddenly wants to eat with their fingers, adapt their diet to make it easy for them to do so.

Finally, find time for yourself during the week, even if that is just to take a walk, meet a friend for coffee, watch a film or snatch a couple of hours’ rest. Set up a ‘respite’ rota for other people involved with the patient to take over your duties for a while, and to make sure they have everything they need. Making contact with other families who are in the same situation could help too, as this will provide you with people to compare notes with, support you through the difficult times and celebrate the glimpses of your loved one’s pre-dementia character.