Whilst younger people with AD can be treated in much the same way as older people with the same disorder, perhaps with less risk, the findings from AD studies cannot simply be applied to other diagnoses. Patients with FTD do not respond to cholinesterase inhibitors, which indeed may worsen their symptoms. They are particularly sensitive to the side effects of antipsychotic drugs but some aspects of their behaviour may benefit from treatment with trazodone.

Accurate diagnosis alone is insufficient. Younger people with dementia, their families and supporters require a comprehensive, multidisciplinary review of their needs followed by an individualised, age-appropriate care plan. These needs are seldom adequately met by conventional social care services, which are designed for frail older people. In particular, day care, respite and residential facilities for the elderly tend to be ill suited to the needs of younger people. Direct Payments, used to fund personalised support, is a good, flexible method of overcoming some of these limitations.

Younger people with dementia and their families frequently report a lack of adequate information and counselling, particularly around the time of diagnosis. Information about the diagnosis and its implications in terms of treatment and prognosis must be given in a timely, user-friendly and sensitive format. Whilst information on AD abounds, it may be very difficult to access in an easily digestible form for some of the rarer conditions. Education programmes and telephone helplines can be useful sources of information.

Undergoing assessment for possible dementia is daunting, frightening and in some ways disadvantageous. Preassessment counselling is essential in enabling people to prepare for and give informed consent to an assessment.

Developing dementia at a young age is usually financially disastrous for the individual and the family. This situation is compounded by the complex nature of the benefits system. Impartial advice and information provided by a specialist social worker or benefits advisor can be invaluable.

The majority of younger people with dementia are in paid employment at the time of onset and, indeed, occupational dysfunction is a common presenting feature of dementia in younger people. Risk assessment is of pivotal importance and may require a workplace occupational therapy assessment. It is not unusual for younger people with dementia to be made redundant or be dismissed from work. Employers should be encouraged to recognise dementia as a reason for early retirement so that pension rights and other benefits are not affected. Furthermore, some younger people with dementia wish to remain in employment, and efforts should be made to encourage employers to make reasonable workplace adjustments to accommodate disabilities and maximise strengths. It is quite common for younger people with dementia to be drivers. Where doubt remains about driving ability, particularly in atypical presentations, referral to a Regional Driving Assessment Centre will usually provide clarity.

Caring for a younger person with dementia is a major source of stress and burden, both known important risk factors for institutionalisation. Approximately one-half of carers of younger people with dementia have psychiatric morbidity, usually anxiety or depression. Carers have a legal right to have their own needs assessed, but it is also important to recognise and meet the needs of the wider family. Children and adolescents, who may also be carers, are also adversely affected and can sometimes require help from children’s services. Timely input from an experienced specialist community mental health or Admiral Nurse is particularly valued by families, especially when this support can be provided throughout the illness. Marked disruption in family dynamics, however, may require specialised input from family therapy services. Family members frequently overestimate their risk of inheriting dementia and can be reassured by accurate information. Additional complications, however, do arise for families when an inherited disorder is suspected, requiring liaison with genetic services and the provision of counselling and possible genetic testing.

Some forms of early-onset dementia are associated with an increased risk of choking, either as a result of abnormal eating behaviour or neurological dysfunction. Here, assessment by a speech and language therapist is an important part of the risk assessment. They will also be able to advise on management of dysphasia, which can be a major frustration to both patient and carer, increasing the risk of behavioural disturbance. Falls are particularly problematic in conditions such as HD and PSP, requiring input from physiotherapy. Dietary advice is important in conditions resulting in excessive weight loss (HD) or gain (FTD).

For successful, sustained service development, specific commissioning arrangements based on local need are required, with individuals identified at both a purchaser and provider level with responsibility for the service. There must be strong clinical leadership from well-motivated, experienced, specialists with dedicated clinical time. For populations of 500,000 and above, a dedicated multidisciplinary team is justified. Younger people and their families should be involved as partners in service development, and there must also be close collaboration with other services, with clear but flexible demarcation of responsibilities. Initial development should concentrate on diagnosis and community-based support.

Institutionalisation risk appears disproportionately high in younger people with dementia, with up to 30% residing in some form of care. It has been estimated that approximately 15 residential, nursing or long-stay places are required for every 100,000 people at risk (Harvey et al., 2003). Although institutional care can be delayed and sometimes avoided by good community care, specialist long-stay provision remains essential, because younger, physically robust patients with dementia generally do not mix well with their frail, older counterparts. Psychiatric admission is best avoided, as the needs of younger people with dementia cannot usually be adequately met on either older adult or general-adult wards.