Guides for Carers
Our team has also developed two freely accessible guides for people living with FTD:
- Positive Behaviour Support for Individuals with Dementia: A Family Education Workbook
- Toolkit for Living with Dementia during COVID-19
Additionally, the Dementia Training Australia Guide for people living with dementia is a resource that clinicians at FRONTIER continually recommend to advise on day-to-day functions such as hygiene, meal preparation, mobilisation, communication, eating and drinking, and sleep amongst others.
New Diagnosis: 10 General Recommendations
A diagnosis of FTD is a life changing event that will initiate several questions for what to do next.
Give yourself time to process the diagnosis, and then begin acting on the following recommendations.
There is a lot you can do at the beginning of the dementia journey that will be of benefit at the end.
- Decide who to disclose the diagnosis to
- Identify social supports
- Build a care team
- Make a decision around formal support
- Determine the functional capacity of the person with dementia
- Evaluate the safety and adaptability of your home environment
- Financial planning
- Initiate legal planning
- Educate yourself on FTD
- Assess your own health and emotional resources
FTD is a sensitive and serious diagnosis. Make the decision to disclose the diagnosis through the lens of whether it would be helpful to the person with dementia or not. You might inform the neighbours so that they can monitor for wandering or other dangerous behaviours in your absence. Some people with the language-based dementias find it helpful to disclose the diagnosis to friends and family so that there is an explanation for their communication difficulties.
Who will be able to assist with practical, emotional, and event financial support if needed? Make a list of family members, friends, colleagues, neighbours etc that you will be able to call upon. You cannot look after the person alone and will need support as the disease progresses.
Following diagnosis, identify a reliable GP and specialist (typically a neurologist or geriatrician). Form a relationship with these doctors early in the disease course so that they can establish a relationship with the person with dementia and become familiar with their condition and history. This is important for the end stages of the disease when the GP and specialist will be able to make informed decisions about the persons health and advocate on their behalf. We recommend consulting with a local specialist every 6-12 months. Other health professionals that may be of benefit include a psychologist, psychiatrist, occupational therapist, speech pathologist, physiotherapist, and music therapist.
If you are an Australian resident, and are <65yo with a diagnosis of dementia,
you are eligible for the National Disability Insurance Scheme (NDIS): https://www.ndis.gov.au/
If you are an Australian resident, and are >65yo with a diagnosis of dementia, you are eligible for My Aged Care: https://www.myagedcare.gov.au/
Functional capacity refers to how well the person with dementia can initiate, plan,
and carry out day to day activities. There are two major categories:
1. Basic activities of daily living: Hygiene, dessing, eating, toileting
2. Instrumental activities of daily living: cooking, using the telephone, going on outings, shopping, driving and use of public transport, managing finances, and housework.
The most common trajectory of decline in functional capacity is the deterioration of instrumental activities of daily living followed by basic activities of daily living. Support in these areas of functioning should be in a stepwise fashion – begin by monitoring and providing supervision, assist with organisation, take over the task completely or introduce aids or external support.
A diagnosis of dementia will usually result in modification of the home environment, especially if the person with dementia has movement or balance problems. Examples of home modifications include clearing clutter, making the bathroom and toilet clearly visible, installing brighter lights in rooms, and using sturdy plastic plates and cups instead of glass. Your formal care package may provide funding for modification of your home.
Evaluate your financial situation. Post diagnosis, it is likely you will have to pay for additional medical appointments (e.g., seeing a specialist) and support services (e.g., speech pathology, physiotherapy, respite, etc) if these are not funded by a formal care package (NDIS or MyAgedCare). It is also a good idea to reassess management of the household finances if the person with dementia was previously paying bills, etc. Emerging research in FTD has shown that people with FTD have reduced financial literacy, and so informing the bank about the person’s diagnosis will enable them to keep an eye on the account and track any untoward spending.
A person with dementia will progressively lose their ability to make decisions about their finances, personal affairs,
and even their own health. Post-diagnosis, there are three major things you need to implement:
1. Appoint an Enduring Power of Attorney: this means appointing a trusted individual or a group of individuals to take control of financial affairs and assets on behalf of the person with dementia. You may not need to exercise your EPA from the very start, but it is a good idea to put this in place for when the person with dementia no longer has capacity to make financial decisions. The requirements for an EPA vary from state to state. More information can be found here: https://info.australia.gov.au/information-and-services/family-and-community/wills-and-powers-of-attorney/powers-of-attorney
2. Create and/or update Wills: if you have been diagnosed with dementia you should seek the assistance of a lawyer (or the Public Trustee in your State/Territory) when you draft or update your will, especially if you have noticed your dementia is affecting your decision-making capacity. More information on Wills for each State/Territory can be found here: https://info.australia.gov.au/information-and-services/family-and-community/wills-and-powers-of-attorney/wills
3. Appoint an Enduring Guardian: an Enduring Guardian is an individual or group of individuals you legally appoint to make decisions about your health, where you live, and other lifestyle matters. The Enduring Guardian can also make decisions about Advanced Care Plans. The process of appointing a guardian varies for each State/Territory, however it is generally done through the Civil and Administrative Tribunal:
Being educated about the disease will allow you to cope better and to recognise what changes are due to the dementia. Differentiating the disease from the person will help maintain an empathic relationship towards the person with dementia. Read about dementia, ask questions, talk to others, and reflect on your own experience. Importantly, remember that you cannot change the person with dementia. Instead, concentrate on modifying the environment and changing the way you interact with the person with dementia.
Are you in a position to provide ongoing care to the person with dementia? Is there anything you need to do to safeguard your own health? Be flexible with your own expectations as a caregiver. Exercise healthy and sustainable standards of caregiving and know your limits. Many carers find it helpful to get counselling early on or join a support group.
Challenging behaviours: Tips for the Carer
- Accept that challenging behaviours are a symptom of FTD
A person’s behaviour and personality changes because of shrinkage in certain parts of their brain. Brain changes typically occur in the frontal lobes, which is generally responsible for judgement, behavioural control, decision making, and empathy.
- Know the person
It is important to know the person well. This includes his or her personality, past experiences, likes and dislikes, and the things which are important to him or her. The family carer is best placed to know this information and use this knowledge when actively managing the persons behaviour and/or when making decisions about their care.
- Consider behaviour as a form of communication
The person with dementia maybe expressing something in their behaviour that they can’t express through words. For example, behavioural changes may be indicative of underlying pain, discomfort, confusion, or feeling overwhelmed.
- Evaluate the behaviour
Is the persons behaviour risky and dangerous or annoying and frustrating? Making this distinction will help with what behaviours you spend time trying to manage, and what behaviours you accept and let be there.
- Ensure the person with dementia is as physically well as possible
When people with dementia are unwell, they will be less able to use the skills they still have. Having check-ups with the GP, providing good nutrition, encouraging exercise and managing medications will assist with this. Check for visual and hearing problems and make sure the person has glasses or hearing aids if needed. If behaviour deteriorates rapidly see your GP as there may be a medical cause for this (e.g., a urinary tract infection).
- Monitor your own mental health
Carers of people with FTD have higher rates of anxiety, stress, and depression compared to carers of people with Alzheimer’s disease. It is therefore important to continually monitor your own emotional and physical health, and to take steps to prevent emotional and physical burn out.
- Be aware of your level of responsibility
Be realistic about how much care you can provide, and if some of the responsibility can be shared with another family member, friend, or formal support service. Acknowledge that there is a limit to how much care you can provide and the fact that you will be better at managing some parts of the disease better than others.
- Modify the environment
The environment has an impact on the ability of the person with dementia to use his or her skills. A noisy and over-stimulating environment may interfere with concentration and comprehension leading to more agitation. Simplify the environment as much as possible. If possible, set up a specific space/room for the person with dementia and make this comfortable and inviting.
- Reflect on incidents and evaluate behavioural plans
Reflecting on what is happening can be a useful learning tool. Think about protective measures that have promoted the well-being of the person and triggers that contribute to the person’s behavioural symptoms.
- Keep a diary
Good record keeping will assist with communication with health professional and family members involved in the person’s care. Get into the habit of physically writing down health changes, incidents, triggers, appointments, routines, and other changes. This will help reduce the mental burden of the carer.Back to top
Accessing the National Disability Insurance Scheme (NDIS)
Individuals who have a dementia diagnosis, are an Australian citizen, and who are under the age of 65 can access the National Disability Insurance Scheme (NDIS), which we recommend as a first step in dementia management. The NDIS application process can be an arduous one, so we have provided a few resources for starting this process:Back to top
Individuals who have a dementia diagnosis, are an Australian citizen, and who are over the age of 65 can access MyAgedCare which we recommend as a first step in dementia management. You can begin the application process on the MyAgedCare website.Back to top
Helpful websites for carers
- World FTD United
- Dementia Australia
- The Australian FTD Association
- The American FTD Association
- The University of California Memory & Ageing Centre
- Alzheimer’s Research UK
- The Australian Aphasia Association
- Dementia Support Australia
- Aged Care
- National Disability Insurance Scheme
- The Carer Gateway
- Palliative Care Australia
- Older Persons Advocacy Network
- Progressive Supranucelar Palsy Support Group
- Carers NSW
Educational & online resources
- FTD Disorders Registry
- FTD Talk
- Dementia Daily
- Rare Dementia Support UK
- Dementia Training Australia
- The University of Tasmania ‘Understanding Dementia’ MOOC
- Eastern Cognitive Disorders Clinic FTD Toolkit
- Accessible Touchscreen Apps for Dementia