People with dementia typically encounter difficulties performing activities that were once very easy. These difficulties can be caused by lack of motivation, planning difficulties, memory decline, or because of language problems. It is possible, however, to help the person to continue performing their everyday activities. Independent of the reasons for the decline in activity, there are three important points to remember when trying to keep the person active:
The importance of early assessment by the local Aged Care Assessment Team (ACAT) cannot be overemphasised; this is typically the key to accessing local services, including occupational therapy. FTD patients may encounter difficulties performing activities that used to be very easy for them in everyday life. These difficulties can be caused by lack of motivation, due to planning difficulties, or because of language problems.
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There is also information regarding planning for the future, such as
The prospect of having one’s driving licence cancelled can be extremely upsetting. Driving is usually strongly associated with independence and autonomy. When a person loses his or her licence important changes to his or her routine follow. This can also mean changes to family members’ routines and roles.
In general, family members are the first to notice changes in the driving skills of the person with dementia, but may find it very difficult to address such a delicate issue. Often the person is unaware of problems but even those who do realise that their driving is deteriorating may be reluctant to report this in fear of losing their driving licence.
Whatever the starting point, driving is an issue that has to be addressed, and the earlier the better, to avoid greater distress later. The risks involved are too great to be postponed.
Reporting to the Driving Licensing Authority
By law, it is the person with dementia or the family’s responsibility to report to the Driving Licensing
Authority any permanent or long-term illness that is likely to affect the ability to drive safely. Your doctor can advise on whether the diagnosis is one that should be reported. If necessary, the doctor will refer the person for a driving assessment. If a driving assessment is to be undertaken there may be costs involved that vary depending on the centre. There are three possible outcomes from a driving assessment:
However daunting the prospect of the assessment and its outcome, it is very important that the person with dementia and their family receive clear advice. It is important to remember that should the person be involved in an accident and it is determined that the accident was caused the health condition, the person may be prosecuted and the insurance may not be valid.
Due to confidentiality, the doctor will not normally notify the Driving Licensing Authority of the person’s condition. But if the person poses a significant threat to public safety and continues to drive, despite being advised not to, the doctor may notify the Driving Licensing Authority.
Alternative transport options
If there is a need to consider alternative transport options, think of your social network and the public
transport around you. Can you involve friends or family members to drive the person, or you, around? Perhaps you can share petrol costs with them? Community transport is available in many areas and may be able to assist in transport to appointments. Contact Carelink on 1800 052 222.
Changes to the routine can be overwhelming at times, but some creative ideas can bring you closer to friends or family members, and may even have surprising benefits.
Language difficulties and driving
Sometimes there are no changes in driving abilities, but the individual may feel concerned about his or her ability to speak if an accident were to occur. Language difficulties are generally worsened by
stress. If this is the case, it might be helpful for the person with dementia to carry a letter from the doctor explaining the nature of the language difficulties. This would be helpful for others to understand the situation and can also help the person to be more confident. The person might wear a necklace or bracelet that lists the person’s address and emergency numbers.
For more information about driving an dementia see the Alzheimer’s Australia website at alzheimers.org.au, then select I Have Dementia>Driving & Dementia>Driving and Dementia.
Dementia causes various impairments, which may affect a person’s ability to carry out his or her job. A neuropsychologist can provide detailed testing which will indicate the areas of ability that have been affected. Neuropsychologists can also provide strategies which may assist in overcoming these problems. They may be able to liaise with the employer to assist in planning changes. Occupational therapists may also be able to assist in developing strategies that build on the person’s remaining skills. Occupational therapists work within hospitals and also in private practice.
Commonwealth Rehabilitation Services may be able to assist the person with dementia to continue employment in the early stages of the illness. Phone 1800 277 277 or mail crsaustralia.gov.au
For more informational about employment and decision making see the Alzheimer’s Australia
website at alzheimers.org.au, then select I Have Dementia > Early Planning > Making Employment Decisions or I Have Dementia > Younger Onset Dementia > Employment and Younger Onset Dementia.
Using the telephone
There are usually two distinct problems with using the telephone, one is due to language difficulties, and the other is caused by behaviour change.
If there are language difficulties:
Motivate or help the person with dementia to prepare a script to be used when making a call.
If the person has some computer skills, using email is usually better because it can be re-read a few times. There is also more time to reply and deal with any issues.
If there are behaviour changes:
The telephone is constantly used for unnecessary calls: contact your telephone provider to set up a control system for outgoing calls e.g. using a pin number before mobile calls, or interstate calls, etc.
Too many mobile calls are being made: change to a pre-paid mobile
The person with dementia buys too many products over the phone: contact your telephone provider to block marketing calls.
Patients with the behavioural form of FTD may lose their interest in the management of finances even if they had done that for many years. If they lack interest and you feel overwhelmed to look after them, consider involving a your bank manager, a family member or a friend that you can trust. Asking for help tends to avoid stressful events.
Other common problems include overspending (which we mention also under shopping), and limiting the access to one card/bank account only can avoid negative surprises later on.
Sometimes the patient only needs some support to continue managing the finances. If you can offer some support without taking over the activity, this is usually very rewarding for both patients and families.
Some families reported having their correspondence taken by the patient, including important letters or bills. In some situations they could not avoid it, because the patient was waiting for the postman while they were out or at work. Two common strategies were:
Some patients feel less confident in writing letters or managing correspondence because of spelling, for instance. Overall, just a general support from a family member, e.g. proof reading, can allow the patient to continue doing their activities with confidence.
Patients with the behavioural form of FTD may have difficulties in controlling their shopping habits, for instance they may want to buy things they do not need, spending more money than necessary. Strategies to control impulsive shopping are closely related to strategies to control finances better. Limiting the amount of money easily accessible may be a good solution to avoid overspending.
If patients have difficulties in understanding the names of the products, fruits or vegetables, they might avoid shopping altogether even if they used to. The use of pictures or packages can make understanding easier, and motivate them to do a familiar activity.
Decline in doing house chores can be caused by lack of motivation (please also refer to lack of motivation, under the behavioural symptoms link), or by planning difficulties.
Planning difficulties usually happen because the patient cannot cope with the several steps that are involved in a complex task. But if the task is broken down in small steps, patients can usually perform them without a problem. For instance, a meal preparation with several dishes may be a big challenge, but doing one dish at a time may be easier. Also, breaking down the preparation of one dish into smaller steps, e.g. fetching potatoes, peeling, boiling, draining, allowing to cool, seasoning, etc, makes the task easier and boosts the patient’s confidence.
Sometimes patients refuse to take their medications. If that is of concern for you, you may want to speak to your pharmacist about alternative forms of the same medication, e.g. powder, or liquid form. It is important that you do not try to change it by yourself, e.g. crushing a tablet, because in many situations this does cause severe alterations to the medication.
Communication Tips (PDF)
Advance care planning
Advance care planning relates to discussion between the person with dementia and his or her family/carers about preferred health care choices for the future. A discussion may be informal and include the decisions the person with dementia would like made if he or she is unable to do so, including future care. This discussion should include the family doctor who can explain potential medical treatments/decisions. An Advance Care Plan may be documented, recording instructions for the use of health professionals in the future.
Part of the following information is extracted from “Legal Planning and Dementia” Alzheimer’s Australia Position Paper 5, April 2005. For a full copy of this paper contact the National Dementia Helpline on 1800 100 500 or visit the website www.alzheimers.org.au/legal.
Some of major issues you need to think about are:
Making a will
A diagnosis of frontotemporal dementia does not necessarily mean that the person is unable to make decisions. But it is likely that there will come a time when the person will be unable to make decisions due to difficulties with memory, language, thinking, and judgment. This combination of deficits often affects a person’s ability to make sound judgments, reason through a problem, and plan for the future.
Some people with frontotemporal dementia may make risky or ill-informed decisions which can have serious financial, medical, and lifestyle implications for themselves, their families, and their employers.
Therefore early planning is essential.
If you are concerned about any of the following, you should contact the Guardianship authority in your State or Territory.
Alzheimer’s Australia has further information on its website at www.alzheimers.org.au/legal or you can call the National Dementia Helpline on 1800 100 500.
Legal issues – Enduring Power of Attorney (EPA)
An Enduring Power of Attorney allows an individual (the donor) to appoint another individual (the attorney) to take control of financial affairs or property when the donor has lost the capacity to manage their affairs.
Enduring Power of Attorney is a formal document which appoints a person to be an individual’s substitute decision-maker. It is called an Enduring Power of Attorney because it endures even after the individual loses legal capacity to make decisions. People with dementia can use an Enduring Power of Attorney to appoint a person to make decisions on their behalf after they lose the legal capacity to make decisions. The person appointed can make decisions about financial affairs and, in some States, decisions about the medical treatments.
Why make an EPA?
Making an EPA lets you choose a person whom you trust to manage your financial affairs should you later lose the capacity to make these decisions for yourself. By planning ahead, you can make sure that the person you select understands your priorities and how you want your financial affairs to be managed.
How can I make an EPA?
An EPA has to meet certain requirements for it to be valid. Usually, you will have to use a particular form and get a particular type of person to witness you signing it. You might also need to register an EPA. These requirements are different in each State and Territory. The Alzheimer’s Australia website at www.alzheimers.org.au/legal can point you to specific information on how to make an EPA in your State or Territory.
Can I change an EPA?
You can revoke or change an EPA so long as you have the legal capacity to do so. In other words, as long as you have the capacity to make an EPA you have the capacity to change it. If you no longer have legal capacity, you won’t be able to change or revoke an EPA. If it becomes necessary, the relevant court or tribunal in your State or Territory may change an EPA or appoint a different person if they think it is in your best interests to do so.
What powers do I give to the person I appoint?
The maximum power the person you appoint can have is the power to make all financial decisions on your behalf. This includes accessing your bank account to pay your bills, selling your house and, in some States, the person you appoint can make decisions about what medical treatment you receive. Alternatively, you can put restrictions on the power of the person you appoint. For example, you can say that you don’t want the person to have the authority to decide where you will live. But remember, someone needs to be able to make these decisions for you if you become legally incapable of making them. If you do not make legal arrangements to appoint an appropriate person to make these decisions for you, then the relevant government body in your State or Territory may need to appoint a family member, friend, or official body to make such decisions for you.
What are the responsibilities of the person you appoint?
The person you appoint is generally responsible for managing your financial records and accounts, including lodging your tax return. This is an important responsibility. In some States, the person may be fined if he or she doesn’t keep proper records or look after your financial responsibilities carefully. In all States and Territories, the person appointed has a responsibility to make decisions based on what they think is in your best interests.
Legal issues – Wills
A Will controls what happens to a person’s property after they die.
Why make a Will?
Making a Will lets you choose what happens to your belongings and property when you die. It may also let you make arrangements for the care of dependent children or your pets. Making a Will makes life less complicated for your family or friends, who will have to look after your estate. Everyone should make a Will. It is especially important for a person with dementia to make a Will because to make a valid Will, you need to have legal capacity. At some point the symptoms of the illness may take away the legal capacity to make a Will.
Ways to make a Will
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 a Will, especially if you have noticed your dementia affecting your decisions in other areas of your life. To make a valid Will, you have to be able to understand and appreciate the decisions that you are making about your assets and the effects of your decisions. If you make your own Will using a kit, your family may later question whether you were mentally capable of making the Will or the Will may not be granted probate after your death. When you tell a lawyer that you have been diagnosed with dementia, he or she can provide advice about whether you have the legal competence to make a Will. If the lawyer is not sure that you are legally capable of making a Will, he or she might ask a doctor to check your decision-making ability. In this way you can reduce the chance of family and friends arguing about the validity of your Will after you have died.
Legal issues – Decisions about medical treatments
At some stage, dementia might prevent a person from being able to consent to medical treatment by affecting the ability to understand the nature of the medical procedure or the risks that may be involved. Your doctor may ask for an assessment of competency if he or she is unsure about a person’s ability to make decisions about treatments or medical tests.
Two things to keep in mind:
Who can make decisions about your medical treatment if you have lost legal capacity?
If you no longer have legal capacity, there are three alternative types of substitute decision-makers who can manage your health affairs for you.
There are two types of tools available:
A dementia diagnosis during active working years may impact greatly on financial plans. Seek advice if the person with dementia has left or is planning to leave employment. This may be obtained from the medical specialist, legal and financial advisors, trade union, and superannuation companies. Alzheimer’s Australia has information available at www.alzheimers.org.au/legal.
Payments for carers
A fulltime carer may be eligible for the Carer’s Payment. Carers may also be eligible for a Carer’s Allowance. Contact Centrelink in your local area or through the website www.centrelink.gov.au.
Practical assistance in the home
A variety of assistance is available. This may include shopping, cleaning, outings, home respite or accompanying people to appointments.
Commonwealth Carelink Centres are resource centres which are able to provide contacts for local services you may require. The phone number is 1800 052 222. If an individual needs assistance in a number of areas, or is unsure about what help is needed, contact the Aged Care Assessment Team for assessment and advice regarding packages of care that can be provided in the home. It is important that the carer and the person with dementia identify the support that will enable them to maintain quality of life at home for as long as possible. There is a waiting list for most services so it is advisable to seek help before the need is great.
Respite and residential care
To enable a carer to have a break and to give the person with dementia a stimulating environment appropriate to his or her age and interests, it is important to consider respite. The Government funds many types of respite (home respite, day centre respite, overnight community-based respite, emergency respite, and residential aged care). If you want to know more about the options available to you call a Commonwealth Respite and Carelink Centre on 1800 052 222 or the National Dementia Helpline on 1800 100 500. It is important that you discuss your preferences/needs with someone who is prepared to listen and respond with creative and flexible options beyond aged care facilities.
It is a difficult decision to consider permanent care for the person with dementia. Placement in permanent care typically occurs when there are substantial problems with self-care and mobility or challenging behaviours which can no longer be managed in the person’s home. The carer may want to discuss this with family and health professionals, such as the general practitioner and Aged Care Assessment Team (ACAT), or with some professional who has worked closely with them. The decision about when it is appropriate to place the person with dementia in permanent care is a personal one. It depends on many factors, such as the carer’s health, employment, impact on family members, available support network, behavioural issues and functional abilities of the person with dementia. Low-care and high-care facilities are available. To organise for residence in a care facility it is necessary to obtain an assessment from the Aged Care Assessment Team (ACAT) and to complete a form (called the 3020), which begins the process. This form is current for 12 months (as long as the person’s condition has not changed much in that time). The ACAT member will be able to give advice as to the most appropriate facilities. You do not have to take a place when one becomes available if you feel you are not ready to do so. Aged Care Facilities primarily cater for older people. People with younger onset dementia have different needs and it is widely accepted that such facilities are often inappropriate for younger people with dementia.
For more information on respite and residential care see the Alzheimer’s Australia website at alzheimers.org.au, then select Family & Carers > Residential care.
Hammond Care, in NSW, is also offering new facilities: Streeton Cottage, as the service is known, is located in the Illawarra. The cottage is designed and operates as a domestic home, and has capacity for up to 15 residents. Permanent and respite vacancies currently exist. Referrals are welcome from all over. Prospective residents will need to have received, or be in the process of receiving, ACAT approval for permanent or respite residential aged care. Prospective residents must have a diagnosis of dementia. All enquiries can be directed to HammondCare’s Younger Onset Dementia Case Manager, Fiona Darrow: email@example.com / 4255 7099.
NeuRA is coordinating the Sydney site for the DIAN (Dominantly Inherited Alzheimer Network). This study sets out to look for biological changes that occur in people before they develop the Alzheimer’s symptoms such as memory loss. Over the last two years, NeuRA has been working on a clinical trial program aimed at preventing the symptoms of Alzheimer’s by removing amyloid […]