The FTD Toolkit

Frontotemporal dementia (FTD) is an unfamiliar condition to many health service providers and members of the public. Most people are familiar with the most common form of dementia, Alzheimer’s disease, and therefore tend to associate dementia with old age and memory loss.

FTD is a very different condition from the dementia associated with Alzheimer’s disease. It often presents confronting symptoms and unique management challenges at a much earlier time in life, generally between the ages of 45 and 65 years.

FTD is often thought to be a relatively rare form of dementia, though this perception may be due in part to the fact that it is not yet widely understood and may therefore be under-diagnosed. For this reason, many people with FTD and their families will experience a long and difficult journey before receiving a diagnosis and access to appropriate advice and support.

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What is frontotemporal dementia? – Summary

Frontotemporal dementia (FTD) is a relatively unfamiliar but common form of younger onset dementia that typically occurs between 45 and 65 years of age. Many thousands of Australians are thought to be suffering from this condition.

FTD is associated with atrophy and dysfunction in the frontal and anterior temporal regions of the brain, in contrast to the medial temporal regions affected in Alzheimer’s Disease (AD). Thus, the symptoms of FTD are very different from the symptoms of AD. There are a number of clinical subtypes of FTD, and symptoms can vary a great deal even amongst individuals with similar subtypes. Our understanding of the nature of the brain pathology and genetic mutations associated with FTD is increasing, though the cause of most cases is still unknown. There is no cure for FTD at this time, but many symptoms can be managed effectively.

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Diagnosing frontotemporal dementia – Summary

Diagnosing FTD can be a complex process which is facilitated by the input of a variety of healthcare specialists. The most important diagnostic information is a clear history of the nature, onset, and progression of symptoms.

This information should be collected via independent interviews with the caregiver(s) and, when indicated, with the patient. A thorough cognitive assessment and neuroimaging are also critical to the diagnostic process. It is important to use cognitive and behavioural screening tools which are sensitive to the specific changes displayed by individuals with FTD, as many tools may only detect changes in other forms of dementia. A number of centres in Australia now specialise in the diagnosis of FTD and can provide assistance when this condition is queried.

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A different approach in supporting people with FTD and their families/carers? – Summary

Collaborators in the development of this toolkit, hope that this module may better inform policy makers, funding agencies and health and community service providers about the needs of people with FTD and their carers. We hope that the information in this section and the toolkit more generally may help provide ideas and evidence to support applications for further FTD program development and funding.

The authors of this toolkit are also happy to support and collaborate with any service providers who may wish to establish FTD specific programs. We would also like to be kept informed of any new services for people with FTD so we can pass on this information to the people with FTD and their carers whom we support.

This module will highlight the need to use a person centred problem solving approach to modifying traditional support services and care strategies for people with dementia. This approach will ensure a better response to the unique disabilities and needs of people with FTD and their carers. It will also help us to not lose sight of the person behind the FTD diagnosis.

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Assessing the impact of frontotemporal dementia – Summary

Module 1 and 2 have already highlighted the unique features of FTD and challenges in diagnosing FTD, which require specifically designed assessment tools. Just as many screening tools for dementia can’t diagnose the specific disabilities of FTD, management strategies which were developed for people with Alzheimer’s and other types of dementia, may not always be suitable for people with FTD.

This module is intended as a resource for health care professionals, care workers and family carers/friends who are managing the impact of frontotemporal dementia (FTD) on the individual.

It focuses on person-centred assessment and practical communication and management strategies that will identify and meet care and support needs in order to prevent or minimise behavioural and psychological symptoms of FTD (BPSFTD).

The need to evaluate the success of the strategies we use will also be addressed, as all care givers have an ethical imperative to ensure that interventions are doing good and not also doing harm.

The following modules 4 and 5 bring together the information on FTD contained in modules 1 and 2 and apply it in practical ways to the assessment and care of persons with FTD in the acute, community or residential care settings. This information is also intended to empower family carers and others by informing them about the process of planning care so that those who wish to can apply these principles in their own care giving or contribute to the process with their health service/care support team.

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Managing the impact of FTD disabilities and symptoms – Summary

FTD presents unique management challenges to carers and health professionals. Currently, the evidence base for effective management techniques is limited. While pharmacological approaches are sometimes utilised, non-pharmacological strategies are the preferred management approach for most of the behavioural and psychological symptoms of dementia. A person-centred, problem-solving approach helps to ensure that such strategies are employed effectively for each individual.

In addition to managing symptoms in the person with dementia, carers’ wellbeing must be taken into consideration. Forms of support may include respite care, support groups, and/or individual counselling.

Attending to the needs of all parties affected by FTD is critical throughout the course of the illness.

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FTD as a young onset dementia: special considerations – Summary

Younger onset dementias such as FTD, often presents unique challenges to persons with dementia and their caregivers. These may arise in relation to family circumstances, employment, financial affairs, and legal matters. It is helpful for families to begin considering these issues early in the course of the illness, while the person with dementia may possibly retain the capacity to participate in making important decisions.

Information and assistance is available for those with younger onset dementia and their families. In addition to publically available information, professional advice should always be sought. Appropriate supports are vital in assisting patients and their families cope with the challenges posed by younger onset dementia.

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Resources – Summary

Resources section collates relevant resources under topical categories.

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References – Summary

References section lists relevant scientific publications for further reading. This reference list is unique in its clinical focus and includes a wide range of articles addressing the nature, diagnosis, and management of FTD.

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