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Monday, 09 August 2004

The Social Work Needs of People with Dementia

Written by Prof June Andrews
Professor June Andrews, Dementia Services Development Centre, University of Stirling, writes for Care Appointments Scotland

The social work needs of people with dementia are very specifically related to the nature of their condition and the circumstances in which they find themselves.

Dementia is the name given to a number of illnesses characterised by the progressive loss of mental functions and the ability to look after oneself. There are around 62,000 people in Scotland with dementia, and the number will steadily increase in the foreseeable future in line with the ageing population. Only 1,600 people in Scotland have dementia under the age of 65, but over the age of 90, about a third of people have dementia.

The direct costs in the UK have been measured as greater than stroke, heart disease, and cancer put together (between £7 billion, and £15 billion in 2001).

There is a plethora of advice about what good services should look like. Services must be based on the intervention principles outlined in the Adults with Incapacity (Scotland) Act 2000. The recent report of the Scottish Executive and Alzheimer Scotland Short Life Working Group "Overcoming the Obstacles to the Improvement of Dementia Care" stated that "all is not well with dementia."

The working group recommendations include

  • Integration of commissioning planning and management
  • More awareness raising
  • Removal of negative attitudes
  • Training programmes
  • Development of integrated pathways
  • CHPs to encourage innovative and alternative care models
  • A National standard for information given at the time of diagnosis
  • Support to be given at the time of diagnosis
  • Template for services to be used
  • People with dementia and their families to be involved in discussions about current and future services
  • NHS Boards and local authorities to review information collection

In any account of the social work needs of people with dementia, it is important to know what these recommendations are. However, it is even more important to find out how each social worker can contribute to achieving these outcomes.{mospagebreak}

Each of us needs to start with a clear understanding of the problems of a person with dementia. These usually include

  • Impaired memory
  • Difficulties with learning
  • Reduction in the capacity to reason
  • Concomitant high levels of stress
  • And as a result, difficulty in adjusting to the sensory and mobility impairment of normal ageing.

Social workers are already aware that older people will become the majority users of health and social services by 2024. By 2024 there will be 2.2 million people in Scotland over the age of 50, and half a million over the age of 75. Much of the current pressure on services relates to older people, and the old style systems that we have, although they are dealing with constant change, have in fact adapted slowly to the new reality. Particularly in health, there needs to be a continued shift away from the acute sector, a change which is in line with the recommendations of the Kerr report published in 2005. Different training is needed for both social and health care workers.

More than half the people with dementia in Scotland live at home. To provide the best services to people with dementia, we all need to understand what it is that is of concern to those people and to the carers and families who have contact with them. It is often the "well elderly" who are doing the work of caring. To provide good social work support we need to know what their worries are. There are general issues, unrelated to dementia, which are of concern in relation to all older people. You already know what they are – council tax, pensioner poverty, equality of access to services, health, including podiatry and dentistry, winter deaths. What annoys older people is the emphasis on their use of resources, rather than what they have to offer.

Beginning to learn more about dementia is easy. There is rich information on the Alzheimer Scotland website. (www.alzscot.org) The message is clear. People with dementia and those who care for them will need a range of support throughout the illness. When assessing a person with dementia you need to understand their complicated and changing needs.{mospagebreak}

Emotional support is a crucial part of the care. Because of the increased awareness of dementia, many people are concerned at a very early stage if they notice signs of impaired memory. Symptoms that once might have been dismissed as "just my age" by the client, or worse "just your age" by the GP, are more likely now to be investigated at a memory clinic. The impetus for early diagnosis is increased by the currently available medication, which is more effective at the earlier stages. The clinician may well be reticent to give a definitive diagnosis, because of a sense of helplessness, and a concern about not being able to offer a cure. Self help groups for people with a diagnosis of dementia are springing up around Scotland, and the support given to each other is matched by the support that their carers also find through this channel. Once the person with dementia is aware of their diagnosis, it opens the door to a period of their life when they can take a chance to make arrangements and to enjoy things that they might otherwise have put off. Through the Dementia Services Development Centre at the University of Stirling, we have undertaken a number of projects which celebrate the flowering of creativity that often accompanies the early stages of dementia.

The way in which social workers undertake assessments for people with dementia and their carers is also crucial. The importance of this being "person centred" cannot be emphasised enough. We need to know what is important to them, the carer and the client. The care plan must set out the agreement, and informed consent must be given for information to be shared. It really helps if social workers are able to think from the point of view of the carer and client. Alzheimer Scotland recommend that people keep a diary for a week before social workers come to do the assessment, noting what they do each day and what help they already get. Clients and carers are advised to find out as much as possible in advance about what might be available. They are also told how to check the care plan, and what to do if it does not reflect their needs.

This advice is aimed at being helpful for all parties concerned. When talking to a person with dementia you are talking to someone who may be having difficulty in learning or reasoning. This person may be wondering who will be able to make decisions for them when they no longer can. These fundamental decisions about where to live, who might have access to confidential, or financial or personal information might seem to be slipping away. There is material available for teams to work out how best to help at these difficult times.{mospagebreak}

Even with the carer, you may be talking to someone with extreme stress, sleep deprivation, anxiety or depression. The carer is your partner in the delivery of care, not a client. Their physical and emotional health is as crucial as yours. You may be the first person to point them towards the care and advice that they can get from organisations such as Alzheimer Scotland Action on Dementia. They often complain about lack of "joined up" care, even now, and work needs to be done in line with the collaborative programmes undertaken in England, to use well designed management tools to help local teams work better together.

In summary, it is vital for social workers to recognise that along with the aging population, dementia is going to be an increasing part of their workload. The people who have been consulted about this in Scotland are principally concerned that there is a lack of knowledge about dementia among front line health and social care workers. They are also concerned that services are not joined up. Through the Dementia Services Development Centre) staff including home care workers and professional specialists can undertake programmes of education. This includes workplace based learning, practical study days, and formal study at certificate, diploma, and master’s level, delivered mainly on line. This service at the University of Stirling is made possible through funding from the Scottish Executive, Local Authorities, and through charitable donations. For further reading in this area Dementia Now – Current Awareness Service provides regular updates in this area and is available from the Dementia Centre (www.dementia.stir.ac.uk)