Alzheimer’s; diagnosis and beyond

Alzheimer's; diagnosis and beyond

Alzheimer’s disease is the most common type of dementia; a term used to describe a set of symptoms, such as memory loss, difficulties thinking and language, and in some cases, changes in behaviour and mood.

Currently, there are more than 520,000 people in the UK with Alzheimer’s disease. Worldwide, it’s estimated over 46 million people are living with some form of dementia.

What is Alzheimer’s disease?

Alzheimer’s is a progressive disease. Meaning that over time, the brain becomes more damaged and so, more symptoms develop.

Over the course of the disease, proteins build up in the brain. This protein build-up causes the brain to form structures, which lead to the nerve cells losing connection, and eventually the death of nerve cells and loss of brain tissue.

Symptoms are generally very mild to begin with, but as they grow more severe, the more they can interfere with daily life. While everyone is different and people with Alzheimer’s are unlikely to experience the disease in the same way, there are some common symptoms.

The early stages

Often, the earliest sign of Alzheimer’s is memory loss. More recent memories or new information may be easily forgotten. As the condition progresses, symptoms worsen and start to affect everyday life. The person may start to lose items (like car keys or glasses) around the house, forget about recent conversations, someone’s name or appointments, and they may start to get lost or confused in a place which is otherwise very familiar.

During the early stages of Alzheimer’s, a person’s mood can start to change. Alzheimer’s can be very scary, and not being able to remember what were usually simple things can be frightening. They may become anxious and irritable, and may become withdrawn from loved ones.

The later stages

As the disease progresses, so do the symptoms. Communication, memory and orientation can be increasingly affected, and there may be a need for further support and care.

People with Alzheimer’s may develop seemingly unusual behaviours, acting out of character. This may include agitation, repeating questions, disturbed sleep or aggressive reactions. While distressing for the person, these behaviours can be equally distressing for family, too.

During the later stages of Alzheimer’s, the person can become much less aware of their surroundings. They may have difficulties eating, walking without help and grow weak.

Alzheimer’s diagnosis can be very upsetting for both the person diagnosed, and those around them. But it’s not the end. The development of Alzheimer’s and the life expectancy of someone with it can vary greatly, depending on a number of factors.

Counselling Directory member, Pauline Thomson emphasises the importance of support and for people to remember, “there is still life after a diagnosis of dementia”. Read her tips on how to deal with a diagnosis.

Coping with a diagnosis

Whether you are the person getting diagnosed, or are a family member or friend of someone going through Alzheimer’s diagnosis, it can feel terrifying. You know that, inevitably, the disease will take effect – but, diagnosis is not a sign of the end. There is still life to be lived, however short it may be.

Out of the 7 million carers in the UK, 11% of them care for people with dementia. However, there are many, many more carers working day and night, who are left out of this statistic. The family members, the friends, the husbands, the wives, the daughters, the sons.

Watching a loved one change in such a way is heartbreaking, but it’s important to remember that they are still the person they once were. And believe it or not, there are ways to build memories and live their life to the fullest.

Carey Mulligan, Alzheimer’s Society ambassador, shares her experience in an article for the Huffington Post. She talks of growing up with her grandmother, the fond memories of being a child, her admiration for the woman and, ultimately, her grandmother’s dementia.

She recalls the first time her grandmother started showing signs of dementia, and how frightening it was for the family. Eventually, her grandmother needed extra care, so moved to a care home. She was there for 10 years, as the condition slowly took hold.

“There was never a dull moment when we went to see Nans in her care home. Life is truly being lived in this place; differently, maybe, but it’s being grasped with both hands nonetheless.”

"If you have a loved one with dementia spend time with them. Love them, the same way you always have."When her grandmother passed, Carey explains how she sat and recalled her life; “it struck me how many beautiful memories I had and how lucky I had been to have her as my grandmother.”

“And what occurred to me was how many of those memories were from her time living in the care home in Wales.”

World Alzheimer’s Day falls on 21st September, every year. The awareness day may have passed, but with over 850,000 people with dementia in the UK, we mustn’t stop talking about it. In her article, Carey asks that we do everything in our power to make sure people don’t face it alone.

“If you have a loved one with dementia, spend time with them. Love them, the same way you always have.”

What support is available?

When someone you love is diagnosed with Alzheimer’s, you can suddenly feel very alone. You might not know what support is available. But know that you’re not alone, and there are resources available, which aim to provide information and support.

The Alzheimer’s Society has a helpline and an online community, where users can get advice, share experiences and just talk to people who understand what they’re feeling.

Events and ‘societies’ are also starting to become more popular across the UK. Memory cafes and social groups may be taking place near you – you can search your local area using Dementia Connect. Alzheimer’s Society also runs Singing for the Brain, an initiative set up for those with dementia, and their carers, to socialise, have fun and find support.

Caring for yourself

If you’re caring for a loved one with dementia, it can be very overwhelming. You may still be working full-time and visiting out of hours, or you may be caring for them full-time. Whatever the case, it’s important you look after yourself, too.

When your mind is occupied with somebody else, it can be very easy to forget to look after yourself. Your priorities change and you may spend all your time with them, but it’s important you still have time to yourself.

There are many impacts of caring. It’s a selfless act, but it can be very difficult. Stress and exhaustion are common challenges carers face, as well as a lack of social life and self-care. Your finances can also be affected, which in turn, can exacerbate feelings of stress.

Be sure to take time to yourself; to do the things you enjoy, to socialise, to eat, sleep and wash and to nurture your relationships. If you’re lacking balance in your life and unsure of how to manage caring with the rest of your life, a counsellor may be able to help.

For more information on carer support and how counselling can help, please visit our dedicated fact-sheet. Remember, you’re not alone and help is available.

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Ellen Hoggard

Written by Ellen Hoggard

Content Manager and Digital Editor.

Written by Ellen Hoggard

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