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Dementia is a disease that can affect many aspects of daily life, including eating, food preparation, shopping, cooking and cleaning. These difficulties sometimes prompt care managers to consider meals on wheels as an integral part of a "care package".

Carers of people with dementia provide a form of quality assurance for services. A survey completed by 3,777 carers supporting people with dementia reported many problems with food and eating¹ and 2,000 respondents have recently been further analysed thematically to identify particular issues. This article reports on one area that caused some concern: the value of meals on wheels.

In the survey, 776 people reported that the person with dementia whom they supported had at some time received meals on wheels. Carers reported a number of related difficulties associated with dementia that sometimes made the meals on wheels service more of a problem than a solution.

Some carers said the delivery of a meal was not sufficient to meet the needs of a person with dementia. For some people this was because they could no longer make sense of a meal in that particular format. They were not used to meals looking as they did or did not want to eat them. As one daughter reported: "My mother refused meals on wheels, she was a fussy eater."

Others found that their relatives "did not bother to eat meals on wheels" when living on their own. One daughter found her father was throwing his meals on wheels in the dustbin, another that her father just left them. Other carers reported that their relatives could not manage opening the packaging or heating the meals. A woman caring for her father noted: "I arranged meals on wheels, which my father did not like, and often the meals were left on the side - my father never managed to master his microwave." Only 6 per cent had experience of the meals on wheels service checking that the food delivered had been eaten.

Additionally, some carers explained that their relatives' difficulties with eating, such as not being able to use cutlery or finding food hard to cut, meant meals on wheels remained untouched or only partially consumed. Few (4 per cent) of the original survey said the meals on wheels service provided assistance with eating. One daughter reported that, initially, meals on wheels had gone well. "My mother ate them all at first, but now when I go at weekends I find lots of food containers in the fridge with bits eaten out of them. But at least I know she has food every day - her dog shares the meals on wheels." Another person reported that her relative "had not had a proper meal" for years.

What does this mean for care managers commissioning meals on wheels? It suggests more thought is needed about the mechanics of what is involved. Assessment of a person with dementia needs to be fine-tuned if it is to meet an individual's needs. When negotiating the care package, it may be appropriate to explore various options or methods of delivery. Monitoring and reviewing, involving the carer in reporting back on whether meals on wheels are successful, are essential. For some people with dementia, meals on wheels do work. The service helps to support people living in their own homes, and provides relatives with a break or enables them to work. However, because the needs of people with dementia may change, it is helpful to monitor what works and to learn of problems in good time. Crises, such as further confusion because of dehydration or hunger, can disturb the delicate balances that sometimes enable people to live at home, as they desire.

Other comments reveal that some aspects of meals on wheels provision do not meet some people's needs. There were criticisms that delivery time was unpredictable. One husband recalled: "Delivery time varied - one day, 11.30am, another day 1pm and then 2.30pm." Another person found her cousin was last on the delivery rota and when her lunch arrived at about 2pm "she was cross and hungry".

Some relatives were concerned by the quality of the meal. One had found out-of-date meals being delivered and that the meals were "over- or under-cooked". Portion size was a problem for some and warnings against reheating of some brands meant that if the person did not want to eat at that time, relatives worried about meals being cold.


What does this mean for care managers? They need to know how meals services are organised and what is available. They need to listen to people with dementia and their carers about why a service is perceived as useful. If problems arise, carers should be encouraged to voice their concerns to see if alternatives can be arranged. It is all too easy to note "service refused" when "service inappropriate" might be more accurate. The drawbacks or inadequacies of some services may assist care managers in arguing for a more expensive, but more relevant, package of support. Carers, as some reported in this survey, may simply discontinue a meals service and resume the task of preparing meals. For some this can be a further source of stress, particularly if the carer is in poor health.

While it is important to look at problems, carers' positive reports are also worth exploring. For some, the meals on wheels service worked very well. It provided peace of mind to those who were anxious about what the person with dementia was eating, or whether they were eating at all. One daughter reported how this service prevented her mother eating out-of-date food: "At least with the meals on wheels provision, I know that she has one meal a day which is balanced."

For a minority, the meals service worked because there was help with the meal. One person appreciated that "meals on wheels were delivered by ladies who could sit down and open the containers and give him the knife and fork".

This, unfortunately, was not always the case. Some families reported that meals on wheels had not worked but that care staff who could come into the home and cook for the person with dementia - or just heat frozen food - proved helpful, particularly if they involved the person with dementia. One person regretted that care staff who were employed to help with meals had been told not to let her relative with dementia get involved. She felt this took away her relative's remaining independence.

Finally, some carers did not have problems with the service: there was no service. As one person said: "Meals on wheels are not available in my area." For others, the service was overstretched and one daughter said she "had to fight, bully and beg every step of the way to get the little help of two meals on wheels a day" for her 80-year-old mother with dementia and 84-year-old partially sighted father.

This research shows that meals on wheels can be helpful to those carers supporting people with dementia living at home. However, as others have observed, care planning for people with dementia needs to be flexible and responsive.² Refusal of a service such as meals on wheels or its cancellation may reflect the changing needs of a person with dementia, or may be attributable to the service being insufficient or out of step with a person's needs. Carers have valuable perspectives and their role in monitoring may help care managers prevent crisis.

Jill Manthorpe, Roger Watson and Anne Stimpson are based in the Department of Nursing, Social Work and Applied Health Studies, University of Hull. They are grateful to the carers who responded to the survey and to members of the Alzheimer's Society's Quality Research in Dementia network for their comments.

References

¹ Alzheimer's Society, Food for Thought, Alzheimer's Society, 2000

² D Barnes, Older People with Mental Health Problems Living Alone: Anybody's Priority? Department of Health/Social Services Inspectorate, 1997