Carers of people with dementia

Caring from a distance

The onset of dementia may be very gradual, and where the person concerned lives alone with members of their immediate family living separately, often nowhere near, it may be several years before the extent of the problem is recognised. Many such people are used to their independence and any suggestions from their family that they are not coping adequately may be met with hostility or denial. 

The family meanwhile may be wholly or partly unaware of the way things are going. In some cases they may not have been close at the best of times. In others, distance or other commitments, to do with family or work, provide obstacles to regular contact. Sometimes it is only when some incident has brought the situation to their attention that they discover the extent of the problem, which may have been present in the preceding months or years.

The problems related to the gradual onset of dementia and the events leading to the realisation of the problem are dealt with elsewhere. Here we discuss the worries experienced by carers as they became aware that their parent was having problems with their memory but who had accepted or given in to their parent's wish to continue living independently.

Several carers describe the crisis that convinced them that their parent was in need of care. One daughter who had been feeling guilty every time she left her own home to visit her mother decided after her mother had a fall down stairs that she wanted to be with her and actually left her husband to do this. A daughter whose mother lived in Paris began her attempt to arrange care for her from a distance after an episode where her mother had been found wandering the street in a disorientated state. She describes the difficulties of trying to set up some sort of surveillance. Another daughter finally decided that her mother could no longer live independently after she had gone missing and had to be recovered by the police.

Several carers described their mothers as being both resistant to, and suspicious of, offers of help making it very difficult for them to set up any effective care plan. Arrangements for transport to attend day care centres or for provision of meals on wheels were frequently defeated by the fact that it was impossible to ensure that the person would be home at the time they were available. As one daughter commented, meals-on-wheels could ideally have had the double advantage of giving her mother a meal but also checking to see that she was OK. Nutrition was a constant worry for carers visiting irregularly who found mouldy food in the fridge.

Many carers tried to make arrangements that would allow their parent to continue living alone. Where the carer has their own work to do or other responsibilities keeping them at their own home the fact that the various services which might be available only operate during weekdays can be a serious problem. There were requests that Alzheimer's Society meetings sometimes could take place at weekends and that social services should be more forthcoming with out-of-hours contact numbers.

The choices available to the distance carer may all seem impossible. To move the parent in with them may seem to be too much of a stress for the family and the accommodation may be unsuitable. The parent herself may be bitterly opposed to giving up her freedom and unable to appreciate the supposed advantages of living with her family. Moving the parent to live nearer to the carer may in some circumstances make the problem worse.

Where there was more than one sibling involved in the caring they would tend to share out the responsibilities. One who was nearer or who had more free time might do most of the visiting while one who was less able to do this might take over the paying of bills.

Many carers expressed gratitude to and concern for neighbours without whom the shaky situation might not have been able to last as long as it did. The daughter whose mother lived in France actually made a point of contacting the neighbours to include them in the network of people watching out for her mother while she kept in contact by telephone. Occasionally there were concerns that the neighbours might be hostile or even take advantage of the elderly woman. At the same time there was sometimes real anxiety that their mother's erratic behaviour might actually be risking danger to herself and her neighbours.

The telephone can be an invaluable means of keeping in touch but can prove wearing when the calls are incessant or worrying when the caller may or may not be 'crying wolf'. Meanwhile the carer struggles on, visiting as often as possible as the situation becomes more and more hairy often ending with an enforced admission to hospital or respite in a care home as the only solution available.

Last reviewed March 2015.

Last updated March 2015.

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