World Fronto-Temporal Dementia Awareness Week 24th September through to 1st October 2016

World Fronto-Temporal Dementia Awareness Week 24th September through to 1st October 2016

Frontotemporal dementia (FTD) is a combination of conditions resulting from the progressive degeneration of the temporal and frontal lobes of the brain. These two areas of the brain play a critical role in decision-making, emotional behaviour and speech. FTD is also known as Pick’s disease or frontal lobe dementia.

The second internationally recognised FTD Awareness week takes place from Sept 24th – Oct 1st 2016. This year, for the second time, countries across the globe will observe World FTD Awareness Week. FTD support organisations in at least 10 countries will collaborate on many exciting events and outreach activities, along a ‘Food for Thought’ theme.
Frontotemporal dementia (FTD) is a combination of conditions resulting from the progressive degeneration of the temporal and frontal lobes of the brain. These two areas of the brain play a critical role in decision-making, emotional behaviour and speech. FTD is also known as Pick’s disease or frontal lobe dementia.
Frontotemporal dementia occurs when the nerve cells in these two lobes of the brain die resulting in the chemical messages that communicate between these cells becoming lost. As the condition degenerates over time more and more nerve cells die causing the brain tissue in these lobes to shrink. Notable symptoms of someone with FTD can be out of character behavioural mood swings and an inability to communicate caused by problems with the meaning of words and difficulty identifying the names of everyday objects.
Whilst FTD is less common than Alzheimer’s or some other forms of dementia, it is recognised as one of the more prevalent causes of dementia in younger people between the ages of 45 and 65. However, because is it relatively uncommon and not directly associated with memory loss, it can be difficult to diagnose. The person with FTD will not necessarily associate changes in their conversational skills or personality with dementia and doctors may not easily identify dementia in this younger group of patients. Frontotemporal dementia may easily be misdiagnosed as the behavioural symptoms could present themselves as a mid-life crisis, depression, stress or even a stroke or schizophrenia.
So what can we do to support people with FTD and help raise awareness of this atypical form of dementia.
So as 24th September fast approaches, we want to encourage people affected by FTD, family caregivers, dementia care organisations and the wider community to embrace World FTD Awareness Week. There are many ways to participate and “Food for thought” events might include a morning coffee/afternoon tea event, lunch or dinner party, cake sales and raffles, to name but a few. Last year, support group members raised awareness of FTD by hosting these and other events in their workplace, home or local community.

Jill Walton, a support group coordinator for rare forms of dementia,, has arranged two events to coincide with the week:

  • 26th September, daytime: cake sale to raise awareness of FTD, RDS, (and hopefully, funds too!). She is hoping to coordinate the selling of cupcakes at a charity provided discount, within the National Hospital for Neurology & Neurosurgery.
  • 26th September 5.30-8.30pm: film night (Looks like Laury, Sounds like Laury) and support group meeting to follow at 33 Queen Sq, basement lecture theatre, WC1N 3BG.

The Good Care Group currently provides 24 hour live-in care for an increasing number of people with Early Onset Dementia and through our own in house Consultant Admiral Nurse, we can support people with all types of dementia developing highly person centred care plans to meet their ever progressive needs. Many people who develop early onset dementia find it much harder to accept because it is generally completely unexpected and may come at a time in their lives when they have significant commitments, responsibilities and obligations. They may still be working, have children living with them at home and have high financial commitments such as mortgages and other mid-life costs. As such, all of the family need to adjust their way of life to successfully cope with the implications of the dementia. Please see below a case study on one of our clients with a FTD Dementia.

Case Study – Fronto-temporal Dementia – Sarah

Our Client

Sarah is 53 years old and has been diagnosed with fronto-temporal dementia (FTD). The diagnosis took two years to finally obtain; at first doctors believed that Sarah was clinically depressed, having a mid-life crisis. This was a really difficult time for Sarah and her family; her husband Robert and her two children. Sarah was behaving in unusual ways; she was apathetic, withdrawn, and uninterested in her job or her children. She was also having emotional upheavals; terrible low moods and periods of unexplained anger. No-one understood what was happening to her and the family were pushed to breaking point. The diagnosis almost came as a relief; at least now everyone knew what was wrong. A period of planning followed, and Sarah was clear that she wanted to stay at home with her family for as long as possible. Over the past few months Sarah’s cognitive ability has changed; her social skills and behaviour, and her ability to manage the anger that she sometimes feels have diminished. Robert called The Good Care Group hoping that we could help.

Our service

Prior to our Care Manager arriving for the initial assessment, Robert had already had several long conversations with our Consultant Admiral Nurse, who was able to gather information about Sarah, Robert and the family as a whole; the challenges they were facing, the things they were feeling, the things that were important to them. On the day of the initial assessment Sarah was feeling particularly angry; she is a young, physically healthy and active lady who was feeling cooped up and stifled by her family, who were trying to keep her safe. She had broken some plates in the kitchen, and her children were feeling scared. Our Care Manager had walked into a crisis situation. The initial assessment focussed on simply building a relationship with Sarah, and offering reassurance to the family that things would get better. A second meeting was required to complete the assessment, but on that first day it was more important to focus on Sarah and her family, how they were feeling and what they needed. A care plan was agreed and two professional carers were carefully matched in terms of their experience of working with people with FTD and their energy levels (Sarah is a lady who likes to be on the go – all of the time!) as well as shared interests in walking and Pilates. The care plan took account of physical and medical needs, liaison with the multi-disciplinary team as well as social life, emotional support and the important activities of daily living. A relational approach was used to ensure that the needs and wishes of the whole family were taken into consideration in the design of the service.

Our success

Sarah’s carers have established a very close relationship with her; she describes them as her friends. Each day before breakfast they do Pilates workouts together, and a long walk with a packed picnic forms the backbone of most days. The carers have also worked hard to fit in with the family way of life; they wear many hats; advisor, friend, carer, navigator, supporter, counsellor, listener, house keeper. The one to one model has enabled a close observation of Sarah’s moods and the things that make her happy, angry or sad. This has resulted in reduced anger and aggressive outbursts, and a far better quality of life for all the family. There are still tough times, but the crisis observed at our initial assessment was a now thing of the past.

If you would like to find out more about live-in care for someone with early onset dementia, please contact one of our care advisers who will talk you through the options with the associated costs available to you.

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