Frontotemporal dementia: how the care is different

The comparison explains a good deal of what families describe before a diagnosis. A husband who has become short-tempered, spends without thinking and no longer seems to care about his wife's feelings still remembers every appointment, so a memory test in the GP surgery may come back normal. The Alzheimer's Society notes that standard tests of mental abilities, which mostly focus on memory, can be less helpful in diagnosing FTD, and that the changes can look more like somebody going through a difficult or emotionally challenging time. Dementia UK names depression, work stress and relationship problems among the things it can be mistaken for.

If this sounds familiar and nobody has yet said the word dementia, it is reasonable to ask the GP about frontotemporal dementia by name, and to take along a written list of what has changed and when. Getting a dementia diagnosis covers the route through the GP and the memory clinic. What FTD is, and how it sits among the other types, is explained in the different types of dementia. Because it usually begins before 65, the questions about work, money and children at home have their own page, young-onset dementia, and this page does not repeat them.

The loss of drive is worth understanding properly, because it is the change most likely to cause resentment at home. A person with FTD who spends the day on the sofa is not choosing to leave everything to their partner, and telling them to make an effort will not produce one. What tends to work is a short, specific prompt at the moment the task is due, such as handing over the coat and saying it is time for the walk, rather than a general suggestion to get up and do something.

For the language variants, the NHS lists speech and language therapy among the treatments, to help with communication and, later on, swallowing. Ask the GP or the memory service for a referral early, while there is more speech to work with.

A Lasting Power of Attorney has to be made while the person has the mental capacity to make it, according to GOV.UK, so it is one of the few things on this list where timing matters. Lasting power of attorney and dementia explains both kinds and how to raise the subject. On driving, dementia and driving covers telling the DVLA and what happens after that. For the cards that explain a person's condition to shop staff or bus drivers without a conversation in front of them, see dementia assistance cards.

The loss of insight shapes almost everything else. Dementia UK describes it as a lack of awareness of the changes in themselves, and it means a person with FTD may be sincerely puzzled, or angry, that anybody thinks they need looking after. There is little to be gained from trying to win that argument. When someone with dementia refuses care covers ways of introducing help that do not depend on the person agreeing they are ill.

None of the right-hand column is a failing on the family's part. It is the approach that fits Alzheimer's, and it is what most of the advice you will have read describes. The change of subject in the left-hand column comes straight from the Alzheimer's Society's guidance on FTD, which suggests distracting the person by asking a question about a completely different topic. When behaviour tips into anger, aggression and agitation in dementia covers the pain and infection checks to make first and what to do while it is happening.

A paid carer can be useful here for a reason that has nothing to do with skill. The routine that FTD needs is tiring for one family member to hold together every day, and a regular carer who arrives at the same times takes part of it on. For a husband, wife or family who want a regular carer to keep a steady routine going, you can search for carers near you and compare their rates, then ask each one about their experience with changes in behaviour. What a carer says about that experience is their own account on their profile, and it is for the family to check with the carer. The same carer every visit explains why continuity matters so much when the routine is doing the work.

The client contract asks you to give the carer full and accurate information in advance about known risks, and it names cognitive impairment and challenging behaviours among them. With FTD that means telling a carer about the spending, the remarks, the food and anything that has happened in public before the first visit, so they can plan for it rather than meet it unprepared.

If your relative was given an Alzheimer's medicine before the diagnosis was changed to FTD, raise it with the specialist or the GP rather than stopping it at home. The NHS page on treating frontotemporal dementia sets out the options above, and NICE guideline NG97 is the guidance doctors in England work from. NICE also notes that FTD has a genetic cause in some people, which is a question for the specialist if other relatives have had a similar illness.

1. 1

   Ask the council for a carer's assessment

   This month

   The Care Act 2014 requires the council to assess a carer's own needs whatever their finances. It is the route to respite, support and sometimes a budget of your own.
2. 2

   Book breaks before you need them

   Every week

   A regular afternoon or day that belongs to you works better than waiting until you are exhausted. The NHS lists respite care among the support for FTD carers.
3. 3

   Find people living with the same diagnosis

   When you are ready

   FTD is less common, and a general dementia group may not recognise what you describe. A group for FTD specifically can make the difference.
4. 4

   Keep a specialist nurse or helpline in reach

   For the hard days

   Dementia UK and the Alzheimer's Society both give advice to family carers by phone and online.
5. 5

   Tell the GP how you are

   At your own appointment

   Your own sleep, mood and health belong on the record too, and the GP can only help with what they are told.

For a group made up of people caring for somebody with FTD, Rare Dementia Support, a service led by University College London, runs support groups and one-to-one support for families affected by frontotemporal dementia. Dementia UK has Admiral Nurses, specialist dementia nurses who support families, and the Alzheimer's Society publishes guidance on FTD for carers. Admiral Nurses and free dementia support explains how to reach them.

On breaks, respite for dementia covers the choices, from a few hours a week at home to a longer stay, and what is a carer's assessment explains what happens at one. If the strain has been building for months, the signs of caregiver burnout is worth reading for your own sake, and caring for a husband, wife or partner covers what the role changes between the two of you.