Life after diagnosis: a report on meeting the needs of people in the early stages of dementia

Executive summary

1. This report aims to inform policy makers and professionals about the hidden plight of people experiencing the early symptoms of dementia and the assistance they need to live their lives as normally as possible for as long as possible.
2. In recent years, Alzheimer Scotland has focused its policy development work on the urgent need to increase services and improve the quality of care for people in the advanced stages of the illness and their carers. Whilst it is essential that this impetus is sustained there is now a compelling case for making resources available to support those with dementia at an early stage.

This report calls for:

• the right of the person with dementia to make informed decisions whilst able to do so and to enjoy a quality of life as close as possible to their normal lifestyle
• the opportunity for the family to understand the illness and provide appropriate support
• early intervention to reduce carer stress, delay institutionalisation and enable better targeting of formal services as the illness progresses
• the continued development of sophisticated diagnostic techniques so that a definite diagnosis of dementia can be made more accurately at an early stage
• advances in treatments which enable doctors to prescribe drugs earlier in the disease process, when they can be most beneficial.

3. 10,000 to 12,000 people are diagnosed with dementia in Scotland each year. Help offered at the point of diagnosis is very limited in most areas. Research indicates that many doctors are still reluctant to tell the patient what is wrong. This was the situation for those diagnosed with cancer some 20 years ago. Without the diagnosis people with dementia are left in the dark to become increasingly anxious and withdrawn as control over their life dwindles.

4. Research shows that people in the early stages prefer to know their diagnosis but need accurate and timely information about the illness, emotional support and counselling in order to be able to cope. They also need information about welfare benefits, services available to help and legal advice. However, no one should have the diagnosis foisted on them if they clearly don’t wish to know, but this should not preclude the offer of appropriate support.

5. Research also shows that people with dementia can benefit if their family and friends also know and understand their diagnosis. They have a crucial role in providing emotional support, assisting with memory aids and the management of day-to-day activities. Carers also need accurate information about the disease; emotional support and training in how best to give support to the person with dementia. Studies indicate that carer training can be highly effective in the development of coping strategies and delaying institutionalisation. Some research also shows that interventions which come too late, for example respite care, often have the effect of exacerbating admission to long term care.

Summary of recommendations

Services

Alzheimer Scotland believes that services for people with dementia should be integrated, comprehensive and available in every area. People with the early symptoms of the disease and their carers require:

• accurate and timely diagnosis
• information and emotional support at the time of diagnosis and after
• access to specialist advice and assessment
• access to memory training and rehabilitative activities
• access to appropriate drug treatments
• information, counselling and training.

Planning

The services needed by people in the early stages of dementia should be included within dementia care strategies which should be part of joint community care plans and mental health strategic plans. Health and social work planners in collaboration with directors of clinical services should conduct local assessments of need.

Consultation must include people with dementia and their carers and those voluntary organisations representing their interests. Formal planning agreements between health and social work must include agreement on which agency is to take a lead role in the development of early stage dementia services and initiate joint commissioning where appropriate.

Services for people in the early stages of dementia should be given priority in the commissioning and purchasing plans of local authorities, health boards and health trusts.

Resources

Additional funding and the use of existing resources should be targeted at:

• training for doctors (general practitioners) on dementia generally and the early symptoms in particular, including the value of early diagnosis and good practice in ‘breaking the bad news’
• training for social care staff in the early identification of possible symptoms of dementia and the importance of diagnosis
• counselling and other forms of emotional support for people with dementia and for their carers
• employing sufficient numbers of specialist staff to develop and operate rehabilitation services for people with mild to moderate dementia, for example community psychiatric nurses and occupational therapists
• purchasing new drug treatments in sufficient quantities to meet assessed need
• production of information materials about dementia and services available to help in written, and audio/visual formats
• training for staff involved with carer education and training and investment in carer training programmes
• the development and implementation of health promotion strategies to encourage earlier referral
• the production of guidelines on driving and dementia for doctors, carers and people with dementia.

Collaboration

• GPs, with other professionals, to improve their links and develop more effective multi-disciplinary working
• GPs and consultants to improve their system of collaboration on referral for diagnosis and assessment
• GPs and voluntary organisations to forge partnerships locally to support people in the early stages of dementia and their carers
• joint commissioning for specialist services to support people in the early stages and their carers, for example counselling
• Alzheimer Scotland at a national level and local level to work with GPs to increase awareness of the organisation and its services.

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