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Real life: Living with dementia

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From diagnosis to life afterwards, blogger and health campaigner Beth Britton explores how dementia affects the person living with it and their family

First and foremost, what dementia teaches us is that no two people experience it identically. This was something I came to understand during my dad’s nineteen years with vascular dementia. 

During that time I met many other people who had been diagnosed with vascular dementia, and I learnt that each person was unique in how they coped, what they experienced and how their dementia progressed. 

What is dementia? 

Beth Britton is a health campaigner and blogger. Beth’s dad had vascular dementia for the last 19 years of his lifeBear in mind too that vascular dementia is just one of over 100 different types of dementia, with Alzheimer’s Disease being the most common, and it’s possible to have more than one type of dementia – this is known as having ‘mixed dementia’.

There is a common misconception that dementia is all about memory problems. Whilst it’s true that for many people the onset of dementia is characterised by problems with their memory, it’s equally possible that it may be other symptoms. 

These can include difficulties in sequencing tasks (getting dressed in the right order or making a cup of tea), orientation problems (getting lost in familiar places), communication issues, or difficulties managing common aspects of daily life (finances, shopping or socialising) that are noticed initially.

Getting a diagnosis 

A diagnosis of any type of dementia can initially feel like the end of the world for the person with dementia and their family. Common feelings include a sense of loss, hopelessness, blame, anger, guilt, regret and what can seem like uncontrollable sadness. 

Unfortunately the historical viewpoint that many of us have in relation to dementia helps to create and reinforce all of these emotional responses, but it’s important to remember that there is life after diagnosis.

There are numerous examples of people who are living well with their diagnosis of dementia, and organisations like Dementia Alliance International and DEEP (Dementia Engagement and Empowerment Project) give people who are living with dementia a platform to share their experiences. 

It’s often the case that the most valuable messages anyone who is newly diagnosed can hear come from their peers – people who’ve lived with a diagnosis for some time and have been able to develop coping strategies.

Remaining positive

Yes, treatment options are limited and won’t halt dementia forever, and yes, there isn’t a cure, but becoming mired in negative messages about degeneration is not helpful for maximising the potential a person with dementia has. 

I would never wish to deny the realities of dementia to anyone, and certainly in my dad’s latter years he had numerous difficulties, but at the same time as a family we managed to find a lot of positivity and happiness.

Even when dad’s communication diminished and he developed swallowing problems, we still enjoyed music together, singing and laughing, celebrating special occasions, getting out and about in our local community, sharing meals and snoozing in the sunshine.  

Coping as a family

As a family we made a conscious decision to ensure that dad’s years with dementia were as happy and comfortable as possible. That meant dad’s needs coming before our own, and frequently putting on a brave face, something many families and family carers will empathise with. 

Of course this can often mean that the needs of the carer go unnoticed, and carer breakdown is common for many different reasons, not least if a person with dementia becomes immobile or incontinent.

The very nature of being a family carer is a position of selflessness, but it is vital to recognise that families and family carers need support too. There are lots of carer’s organisations, both local and national, as well as the Alzheimer’s Society who can provide help and advice, but of particular interest to families who are supporting a loved one with dementia are Admiral Nurses

They are specifically trained in dementia care, and although Admiral Nurses are only available in a face-to-face role in some areas of the UK, everyone can have access to their expertise via the telephone helpline Admiral Nursing Direct.

Top tips

  • Seeking help early for any problem or worry a family carer has is absolutely vital if they are to support a person with dementia to the very best of their ability. 
  • Ensure that a person with dementia is enabled to retain as much autonomy and independence as possible, and remains physically, socially and mentally active. 
  • For families it’s important to learn to adapt as life changes, be open and flexible to new ideas, celebrate simplicity and above all else, live in the moment.

Beth Britton is a freelance health campaigner and blogger specialising in issues affecting older people, specifically dementia. Beth’s dad had vascular dementia for approximately the last 19 years of his life. 

She aims to provide support and advice to those faced with similar situations, and to help create improvements in dementia care. She is a member of the Standing Commission on Carers. This article has been commissioned by retiresavvy and any opinions voiced are the author's own.

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Comments

Commonly seen symptoms of dementia includes: memory loss, social disengagement, mood swings, behavioral changes such as aggression, agitation, restlessness, physical or verbal violence which makes them difficult to handle and also a threat to others. It is a disease that no one knows but now the trend is changing and the probability of developing dementia is increasing - 1 in 10 people is at the risk of developing it at any part of life. It has several types and the most commonly known is Alzheimer’s Disease. The other types are Vascular Dementia, Parkinson’s disease Dementia, mixed Dementia, Frontotemporal Dementia, Huntington’s Disease, Creutzfeldt-Jakob Disease, Normal Pressure Hydrocephalus and Wernicke-Korsakoff syndrome. Alzheimer’s disease accounts for 40% to 75% of dementia cases and is the sixth leading cause of death in United States and fifth leading cause of death for those aged 65 years. Reference: http://bit.ly/2e5hYgU
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