Lukewarm response

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

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