Assessing the mental health needs of older people

Assessing the needs of carers

Introduction

Many older people with mental health needs receive help from a family member or friend. It is estimated that three quarters of older people with moderate to severe dementia living in the community have a family carer. Looking after another person affects people's lives in many and various ways. Support to carers needs to reflect individual differences.

Key research findings

For a more detailed account, see Research summary 5 (443kb PDF).

• The impact of caring may have a detrimental effect on the carer's life in many different ways.
• Carers at particular risk are:
  • spouse carers
  • live-in carers
  • those caring for someone with a mental health problem
  • those caring for someone whose behaviour is changing
  • those caring for someone who cannot be left alone
  • those who have a poor relationship with the cared-for person
  • those who do not have someone in whom to confide.

• Many carers report difficulties in having their needs met.

• Practical help with day-to-day situations makes a positive difference to carers' lives.

• Individuals respond to caring in different ways, so help needs to vary accordingly.

• A single service is unlikely to meet carers' ongoing needs fully; diverse preferences require a wide range of services.

• Carers appreciate assessments which result in:
  • access to information
  • access to a new or additional service
  • the opportunity to discuss their circumstances in an objective way.

• Carers feel it is important to:
  • be included in decision making
  • have their expertise valued
  • know whom to contact if needed
  • have a service which is responsive to their needs.

Issues to consider

Carers are often in an invidious position: families are assumed to be the people in the best position to protect an older person's interests, but they do not often have a clear legal mandate to act on behalf of the older person. At present, Enduring Power of Attorney only covers financial and property matters, not decisions about health, care and well-being, although this will change with the implementation of the Mental Capacity Act. Some carers are powerful advocates for their relative's right to live independently in their own homes; others do not want to see their relative exposed to risk and feel they should persuade the older person to accept the 'safe' option of residential care. Relationships between older people and their carers are not always positive, and occasionally there are conflicts of interest between the carer's wishes and the older person's best interests. Some older people are abused by their carers.

Relationships between carers and professionals are not always straightforward, either. Sometimes professionals take a negative view of carers, seeing them as putting their own interests before that of their relatives. At other times professionals may get drawn into acting on behalf of the carers rather than the older person, ignoring the older person and communicating directly with carers. This is more likely to happen where there are communication difficulties with the older person.

Practitioners' responsibilities will be primarily to the older person with mental health needs, but it is in the interests of the older person that the enormous contribution made by carers, often at considerable cost to themselves, should be acknowledged and supported.

There may be particular stresses associated with caring for someone with mental health needs, for example:

• Mental illness and emotional problems can alter behaviour in ways that relatives find distressing. For instance: an older person with dementia may not recognise family members; the long-term effects of some medication may lead to a loss of sexual inhibitions. The older person may no longer seem to be the same person - no longer the person the relative had known and loved.

• Mental illness and emotional problems can alter relationships. The hopelessness, despair and apathy of a severely depressed person can be very hard to live with, for example. And forgetting that you are married or have a daughter can make it hard to maintain meaningful family relationships.

• The stigma of mental illness remains powerful in our society. It is not unusual for carers to feel ashamed or embarrassed that their relative has mental health problems, or guilty that this is the way they feel.

• The carer's own social life may be affected. Social occasions may become difficult or embarrassing, and so social gatherings or going out may be avoided.

• Changes in behaviour may mean that the older person cannot be left on their own safely, so that even a quick dash to the shops becomes fraught with anxiety.

• Day-to-day frustrations, such as endless repetition, being continually followed around, or being unable to encourage the older person to complete the simplest task, may have a serious cumulative effect on the carer's ability to cope.

What you can do as a practitioner

• Remember that not all carers identify themselves as such, and may not realise that anyone is interested in them or that there are services intended for them. Be proactive in seeking out carers and informing them what help is available.

• Recognise that carers may have difficulty recognising or pinpointing what is wrong with their relative, particularly if the onset of the problem has been gradual. Make sure they understand what is wrong with the person they are caring for: check that they have understood the diagnosis and its implications.

• Put carers in touch with any specialist organisations, for instance the Alzheimer's Society, which may be able help them with support, information and advice.

• Make sure you are well informed about what is available for carers in your area, and able to give them information about any local carers' services which may be relevant.

• Keep copies of a range of relevant information leaflets on specific problems which you can give out, for instance the Alzheimer's Society advice sheet on coping with walking about or 'wandering' or the Institute of Alcohol Studies leaflet about alcohol and the elderly.
• Help carers to focus on the person's strengths and abilities, and to maintain the skills that remain.

• Recognise the carer's unique relationship with the older person. With the older person's agreement, use carers as a source of information about the older person, for instance about their likes and wishes, or what they were like when younger.

• Unless the older person does not wish them to be, keep carers informed and involved at all times. Some carers are reluctant to accept help because they fear that they will be excluded and that services will 'take over'.

• If you feel that a carer's involvement is not helping the older person, be honest, but be sensitive about how you address this. Be clear that your priority is the older person, but remember that the carer may have been struggling alone with this situation long before you became involved. Make sure you:
  • Always offer the carer a separate assessment of their needs. Even if they do not take up the offer, remember they are likely to have their own needs and take these into account as far as possible.
  • Encourage carers to think about their own needs, and find ways to help them to maintain their own quality of life. Short breaks or day care for the older person are an obvious way of helping carers have some time for themselves. Encourage them to use these services.
  • Make sure that the services on offer to support carers are appropriate for the person they are caring for. For instance, short stays with strangers in an unfamiliar environment are likely to be very disorienting and frightening for an older person with dementia. A preferable option might be respite care in the person's own home.
• Carers of older people from black and ethnic minority communities are unlikely to be happy with services that are not sensitive to cultural, religious and dietary needs or that cannot communicate with the older person in their own first language. Make sure this is acknowledged and addressed by the services you arrange. (See also Further information below, and Section 6 on the needs of older people from black and minority ethnic communities.)

Further information for practioners and carers

For more information on policy and legislation relating to carers, see Section 8.

Further information

The following organisations provide information on caring and services available:

• Carers UK
• The Princess Royal Trust for Carers
• Alzheimer's Society

Fordementia www. fordementia .org. uk offers advice to family carers through a helpline: Admiral Nursing Direct, freephone 0845 257 9406: an Admiral Nurse is available to give advice on services available, and Uniting Carers for Dementia is a national network of family carers, who are prepared to speak about their experiences and make a difference to the lives of other carers and the people they care for.

Leeds City Council Social Services Department have produced a video portraying the types of community-based and statutory services that can be accessed by carers and service users from black and minority ethnic communities.