Good Care Group | Living with early onset dementia

Living with early onset dementia

We know how worrying and stressful it can be when faced with the reality that an elderly loved one is living with dementia or increasing memory loss and are struggling to cope alone. It is even more distressing when someone you care about is faced with a diagnosis of dementia at a young age.

Whilst an early onset dementia diagnosis can be upsetting for not just the person receiving the diagnosis but for all their family, an early diagnosis can mean the person can live well with early onset dementia with the right dementia care and support in place. Planning what may be needed as the condition progresses means the person living with early onset dementia can maintain as much independence as possible with a good quality of life.


What is early onset dementia

Early onset dementia, sometimes referred to as ‘young onset dementia’ or ‘working dementia’ is defined as dementia diagnosed in a person who is under the age of 65. There are over 42,000 people living with early onset dementia in the UK. It can sadly affect people in their mid to late 40s and early 50s. Dementia is mostly thought of as a condition that affects older and elderly people, but early onset is increasing as the condition is more widely recognised within dementia care services.

Whilst Alzheimer’s disease is the most common type of dementia in older people affecting about 60% of those diagnosed, with younger people other dementias, such as frontotemporal are more common. Those living with early onset dementia are more likely to have rare forms of dementia caused by genetic mutations.

Challenges facing those living with early onset dementia

Whilst early onset dementia is becoming more widely known as a defined form of dementia, the early symptoms of early onset dementia are not immediately recognised and can be attributed to other physical or mental health problems, for example depression or stress. Sadly, for many living with early onset dementia this can delay a formal diagnosis of the condition, for some up to four years.

There are many other challenges those living with early onset dementia will face compared to those who are older:

  • More likely to have a rare form of dementia that affects social functioning, behaviour and personality
  • Those living with early onset dementia may still be working and in full time employment which can cause problems for them in the workplace
  • They may also have large financial commitments, for example a significant mortgage or financially dependent children
  • More likely to have a dependent family who are younger than those in later years
  • They may also be a family carer with caring responsibilities for elderly parents

What are the symptoms of early onset dementia?

Memory loss

Memory loss is the most common symptoms of someone living with early onset dementia. A person will find it increasingly difficult to remember recent events but will still be able to remember events of long ago. They may frequently forget dates and where they have put things. It may also cause them to be repetitive in asking for things or for information as they forget what they have asked for. Getting lost or feeling lost in familiar surroundings are common for those living with early onset dementia. The person may also find it difficult to concentrate or follow conversations as they forget what has been said.

Planning and organisation

Another common symptom someone living with early onset dementia may experience is problems with planning and organisation. This could include difficulties completing tasks and day-to-day activities that had been familiar, such as going to the shops or to work. Numbers may also present problems with people living with the early onset dementia finding number organisation difficult, for example paying a bill. Planning life may also prove a challenge that results in a person, who is usually organised being unnaturally disorganised, a common early sign of dementia.

Losing track of place or time

A person living with early onset dementia may forget where they are or how they got there. The environment may present problems and lack of understanding of seasons, or dates or time. It is common with early signs of dementia to not know the day of the week, or time of the day.

Losing things

This is common in a person who is living with early onset dementia. Losing things and forgetting where they were left. This can cause frustration which may mean the person accuses others of moving objects or taking things.

Poor judgement

Increasing levels of poor judgement are experienced by a person living with early onset dementia. This may also include paying less attention to how they look, their personal hygiene and grooming.

Changes in mood and personality

A person living with early onset dementia may become low in mood and easily get upset, sometimes aggressive about even the smallest things. They may withdraw from work and/ or social activities and be less engaged with family and friends. They may also struggle with motivation.

Visual problems

Other problems for someone living with early onset dementia include problems with vision including judging colour and/or contrast, difficulties reading something or problems with judging distance.

Problems with speech

A person living with early onset dementia may find it difficult to follow a conversation and this may result in them from not joining a conversation. They may also struggle to find the right word or forget the names of close friends or family members.

Living with early onset dementia

We know receiving care in the comfort, safety and familiarity of your own home has far reaching benefits in improving overall health and well-being for a person living with dementia, no matter where they are on their journey. Moving at any stage in life can be disruptive and stressful. When an individual is living with early onset dementia the thought of moving into an elderly care home can be heart-wrenching and daunting given their younger age. We know that staying at home and receiving compassionate, one-to-one care from a highly trained and well-matched professional carer improves quality of life and health outcomes for an individual living with dementia. Our personalised approach to providing high-quality live-in care for a person living with early onset dementia, with a fully managed and flexible service that families can rely on is setting the standards in live-in care.

Living with dementia with specialist care from expert carers

We have been innovating dementia care for over 10 years. All our professional carers are trained in how to care for someone living with early onset dementia and use a range of best practice techniques proven to provide reassurance, reduce anxiety and calm behaviours, whilst reducing the need to use antipsychotic drugs used widely in many care home settings.

This means the person living with early onset dementia can live well, despite the challenges it can present with the gentle encouragement and compassionate care provided by our dementia carers. The high-quality care provided by our carers has seen a 66% reduction in the use of antipsychotic medications compared with the average care home.

Our collaborative approach to working with leading medical experts, academic bodies and leading charities ensure our care is of the very highest standards.

Our work with the Contented Dementia Trust to introduce the SPECAL approach to dementia care helps us to understand and discover what is important to the person living with dementia, enabling us to develop a purposeful and meaningful programme of care.

We adopt a blended approach to delivery of dementia care, led and supported by our own Consultant Admiral Nurse. The support from an Admiral Nurse, working with leading dementia charity, Dementia UK means we can offer unrivalled levels of emotional and practical support based on best practice dementia care to those living with early onset dementia and their families.

All our professional carers are trained in the SPECAL approach to dementia care and our management team complete a higher-level dementia care training programme. It does not stop there. Our care teams receive on-going coaching, mentoring and support based on latest thinking and research that ensure they have the knowledge, skills and aptitude to deliver positive dementia care.

Living well with early onset dementia, through to late stage dementia

There are three main stages in a persons’ dementia journey; early stage/early-onset dementia, mid stage and later stage dementia. It is possible for a person to live well with dementia at home with the right care in place. At The Good Care Group our carers are trained to understand the effects of dementia throughout all the stages of dementia.

Early onset dementia

At this stage our carers will focus on ensuring the person living with early onset dementia is able to live as independently as possible with the support they require, which will be provided in a way that looks to enhance their well-being.

Living well with dementia strategies can be put in place to support memory loss – writing to do lists, settling on one place to keep certain items, like your wallet and keys, having a pad close by to take notes.

Lifestyle choices will be encouraged and actively promoted by our carer. Eating well and exercising regularly, as well as keeping the brain active through puzzles, reading and socialising are all proven to have a positive impact on well-being.

A person in the early stages of dementia is likely to experience changes in their mood and easily become anxious, depressed or more easily annoyed and some will lose interest in their life. Our carers are trained to work with this situation and encourage and stimulate positive attitude and thinking to lift spirits and enhance well-being.

Mid stage dementia

While everyone’s journey with dementia is different, the signs of the middle stage of the disease can mark the moment when changes to the care arrangements are necessary. The middle stage can be the longest and sometimes the most challenging for the person living with dementia and those that care for them.

Our professional carers are trained to identify changing care needs and move at your pace, adapting their approach as needs increase. They can offer the physical support needed for example help with bathing, dress and eating, as well as encouraging gentle exercise that maintains strength and mobility.

The carers employed by The Good Care Group are sensitive to emotions and respond positively to any signs of distress, finding shared, simplified language that enables the person living with dementia to communicate and express feelings.

Late stage dementia

Dementia in all forms is a progressive condition and by the time it reaches later stages it is very likely that you will need 24-hour care and support. During this stage the person living with dementia is likely to have become extremely frail, with severe memory loss and may well have trouble with communicating, eating and even swallowing. They may also spend long periods of time inactive and become prone to infections.

Communication is key at this stage. All our carers are trained to have meaningful interactions with those they are caring for when speech is limited – eye contact, gestures or shared experiences all provide ways to make a connection. Listening to a piece of music together can help someone feel safe, connected and loved.

During late stage dementia more specialist medical care may be needed. At The Good Care Group our care teams are supported by leading clinical experts in the field of dementia care who guide our approach to ensure a person can live well with dementia at home. Carers can draw on the expertise of our in-house Consultant Admiral Nurse and Occupational Therapist. Carers proactively use techniques required for safe moving, pre-empting medical issues, identifying infections that reduce unnecessary hospital admissions. For many our care is life changing with fewer falls, less infections and reliance on antipsychotic drugs.

Dementia live-in care, short term care or respite care

We provide specialist dementia care at home for those living with early onset dementia as either 24-hour live-in care, as a short term care arrangement or as respite care.

With a full time, live-in care arrangement a professional carer will live with you in your home providing around the clock care and support, focused on improving your health and well-being, whilst enhancing the quality of your life. There are many benefits of 24 hour care, not least that the carer will truly get to know you as a person, not just your care needs but they will be on hand to support you to live life the way you wish, with as much independence as possible. Respite care or a short term arrangement provide an opportunity for a family carer to take a much needed break from caring for someone living with early onset dementia, or for you to try live-in care for the first time to see how live-in care works and whether it is the right choice for you in the future.

Useful resources

To support you and your family we have created a useful Dementia Care Guide which provides you with information and advice on how to provide person-centred dementia care following a diagnosis of dementia. There is also a number of dementia charities across the UK who provide families with help, advice and support when they need it most, including Dementia UK and the Alzheimer’s Society. The charity Young Dementia UK is a network that provide specialist advice, support and resources to people living with early onset dementia and their families. The NHS has a useful living well with dementia guide that provides practical tips and guidance so people living with dementia can live a fulfilling life.

Talk to us about your dementia care needs

Our friendly and experienced team is here to help you and your family make sense of the options available to you. Call us today – we will help you every step of the way.

0203 728 7577

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