The Pharmaceutical Journal
Vol 268 No 7199 p704
25 May 2002

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Are we doing enough to care for carers?

By Nicola Gray, Anne Francis and Felicity Smith

In Britain there are approximately 5.7 million informal carers who provide help for family and friends on a voluntary basis, with a carer living in one in six households. Their assistance has been estimated to save the Government £33bn annually.

Pharmacists in all areas of practice are involved daily in supporting informal carers. Indeed, the community pharmacist may be the only health professional with whom they have regular contact. However, there is a need to improve the support for carers in their roles in managing medicines for family and friends. In 1999, the Government published "Caring for carers: a national strategy for carers", which identifies a need for improved information, support and care for carers. Pharmacists must explore how they can best contribute to this strategy.

We have conducted a multicentre study of the roles of carers in assisting older care-recipients with their medicines, the results of which have been published in the latest edition (PDF* 55K) of the International Journal of Pharmacy Practice (2002;10:1–9). This study found that the management of medicines is an integral part of the informal caring role, within the context of the relationship between the carer and the care-recipient. Our findings quantified the medicines-related responsibilities of carers and related these to carers' own coping and health.

The carers who participated in this study were aged between 18 and 81 years, and most were caring for a relative, most commonly a spouse or a parent. Sixty-five per cent were living with the care-recipient. Many different patterns of caring were apparent, reflecting the range of approaches undertaken by carers (with their care-recipients) in managing medicines. These will be familiar to many pharmacists, who are able to identify similar cases in their own practice.

Case 1 A son of ageing parents who live close by arranges for the ordering, collection and dispensing of his parents' prescriptions, and advises them on appropriate use. He is knowledgeable about the medicines, but is self-employed in a demanding business and has many competing priorities.

Case 2 A married elderly couple both receive a large number of prescription items. The husband has adopted a supervisory role in maintaining supplies and assisting with daily dosing.

Case 3 The husband and daughter of one woman were concerned about her intentional non-adherence. They were concerned that the care-recipient should fully comply with the prescribed medication regimen. However, the care-recipient had concerns about the purpose and side effects of the medicine. This case demonstrates the differences of opinion that can arise and which may present difficulties for pharmacists who have to identify and respond to conflicting perspectives of carers and care-recipients.

The extent of involvement reported by the carers ranged from undertaking a single activity, such as collecting a prescribed medicine from the pharmacy, to assuming total responsibility for all aspects of medicines management. The mean number of medication-related activities undertaken by each carer was six, which may include liaising with surgeries in ordering prescriptions, obtaining supplies from the pharmacy, assistance with administration, reminding care-recipients to take medicines and advising on doses and timing.

Many administrative tasks, which perhaps should have been unproblematic, presented difficulties and were a source of worry for carers. For example, ordering prescriptions from the surgery was commonly a complex task requiring careful organisation and vigilance to ensure continuous supplies for their care-recipients.

Carers often assumed significant clinical roles, such as questioning the need for medicines and advising on appropriate doses. Concerns were expressed regarding the side effects of medicines and the lack of review of prescribed drug therapy, particularly in response to changes in the health status of the care-recipient. Carers also made independent decisions to alter doses of medicines, or to stop them altogether. Assistance with administration presented further difficulties, for example, if the carer's presence was required for frequent dosing regimens, or in the use of different formulations. Carers themselves experienced problems with opening containers and remembering doses.

So how can pharmacists better help carers in their disparate situations?

Caring can be a dynamic process among older friends and couples who assist each other. At different times, according to their health status and needs, either may assume the roles and responsibilities of a carer. Caring activities may also be shared between a number of family members or friends. One of the most challenging aspects of providing services to informal carers is taking active steps to identify who they are.

A commonly reported problem was incomplete supplies of medicines, which necessitated return visits. The incidence of these reports from carers suggested that this was a widespread problem with a range of common medicines. Audits of owing prescriptions in pharmacies could be helpful to identify persistent problems with stock flow.

A major cause of concern for many carers was the frequent change in generic brands that were dispensed. Carers reported difficulties in encouraging their care-recipients to accept and take medicines that they did not recognise. Our results indicate that patients' and carers' problems with changing generic products should be examined, along with ways in which greater continuity could be achieved. At an individual practice level, pharmacists could reduce anxiety and help carers and patients in the event of a necessary product change by providing proactive advice.

A balance has to be achieved in ensuring that carers have the information they require to be effective in their activities while respecting the confidentiality of the care-recipient, especially when the patient is "invisible" because the carer is the pharmacy customer. Many older people wish to retain autonomy regarding decisions about their drug therapy. When providing advice, pharmacists need to be aware that the wishes or experiences of the carer regarding medication may differ from that of the care-recipient, and seek to ensure all perspectives are taken into account.

Increasing local flexibility in funding of pharmaceutical services now provides opportunities for creating services that are designed around the needs of carers and their care-recipients. For example, collection and delivery services were greatly valued by carers. There may now be more flexibility for localities to propose targeted collection and delivery services for particular groups of patients and carers, integrated with medication review and domiciliary visits.

We conclude that for many carers and care-recipients, community pharmacists are a valued resource. However, the wide range of activities and responsibilities assumed by carers, within the context of their relationships with care-recipients, presents many challenges for health care professionals. As pharmacists assume greater roles in the management of medicines, in particular supplementary prescribing and managing repeat dispensing, opportunities will exist to develop more effective, carer-sensitive services.

Dr Gray is a research associate within the Drug Usage and Pharmacy Practice Group at the University of Manchester. Dr Francis is lecturer and Dr Smith is reader at the Centre for Practice and Policy, School of Pharmacy, University of London