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Navigating the challenges of caring for someone with dementia

An image of a brain with puzzle pieces to illustrate dementia

Case study by Chimezirim Ozonyiri

Around 900,000 people are living with dementia in the UK, and this number is expected to rise sharply. Chimezirim Ozonyiri looks at some of the difficulties in caring for someone with dementia.

Dementia is a critical and challenging condition that affects millions of people worldwide. Patients and caregivers face significant challenges in managing the condition and accessing appropriate care and support amid the stigma surrounding dementia. Early detection and intervention, specialised training for healthcare professionals, and education about dementia are key to improving outcomes for patients and their caregivers. By working together to address these challenges, we can provide better care and support for people with dementia while improving their quality of life.

A collective term, not a specific condition

The Alzheimer's Society describes dementia as not a specific disease but the general name for symptoms of brain diseases, including Alzheimer's disease. It affects approximately 50 million people worldwide, and although the number is expected to triple by 2050, it remains a misunderstood and stigmatised condition. Alzheimer's disease is the cause of 60–80% of dementia cases, as recorded by the Centers for Disease Control and Prevention (CDC), with other causes including age, family history, trauma to the head, previous experience with depression, compromised heart health, side effects of medication, and metabolism problems — such as diabetes and obesity.

Dementia is chronic and progressive and can affect anyone, regardless of age or background; however, it is more common in older adults, with the risk increasing substantially after 65 years of age. Dementia impairs cognitive functions such as memory, communication, and decision-making. Additionally, people with dementia may take longer to think of and perform simple daily tasks, wander and get lost in familiar places, start having trouble constructing sentences or remembering words, and experience changes in mood. They may also experience changes in their visual perception and find it difficult to determine the size, heights, and distances of objects.

In the early stages of dementia, the signs are not glaringly obvious, often being described as symptoms of mild cognitive impairment (MCI). Late-stage dementia is identified by more prominent behavioural and psychological symptoms of dementia (BPSD), where the patient becomes disoriented and loses track of time – a condition known as time-shifting. They may also lose the ability to recognise family and close friends and, eventually, they may lose the ability to recognise themselves in the mirror.

BPSD symptoms to look out for include:

  • Being aggressive due to unmet needs, a lack of communication skills, and feelings of confusion, fear, or threat

  • Depression and apathy (lack of interest), delusions, hallucinations (which can include smell and touch), hearing strange voices, or seeing things not there

  • Physical changes that increase their susceptibility to infection, such as unsteady walking, more frequent falls, loss of bladder and bowel control, and difficulty swallowing or eating

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Current challenges in managing dementia

  • Service access

One of the biggest issues faced by people with dementia and their families is access to appropriate support. According to 2021 findings from an audit of memory assessment services in England and Wales by the Alzheimer’s Society, the average waiting time from referral to dementia diagnosis had increased to 17.7 weeks, up from 13 weeks in 2019. Waiting times across services nationwide ranged between 0 and 104 weeks (two years), compared with 3 and 34 in 2019. Early-stage drug prescriptions also dropped, suggesting people with dementia were not only being diagnosed late but were waiting a long time before receiving appropriate treatment.

Translating these findings to quality of life, caregivers for people with dementia are prone to feelings of stress, anxiety, and depression, all of which are exacerbated by financial difficulties caused by reduced working hours or unemployment to care for their loved ones. Without adequate support, the quality of life of people with dementia can also be affected – difficulty carrying out tasks and struggling with communication and social interaction can lead to frustration and isolation.

  • Stigma

Despite its prevalence and impact, dementia is often misunderstood and stigmatised, making it difficult for people with dementia or their families to access appropriate care and support. Some common misconceptions about dementia include the belief that it is a normal part of aging, that all individuals with dementia are violent or aggressive, or that it is a hopeless condition that cannot be managed or treated. These misconceptions can lead to fear, isolation, and discrimination against individuals with dementia and their families and caregivers. It can prevent them from seeking help or support, cause them to feel ashamed or embarrassed, and lead to social isolation and loneliness.

What can I do to improve the care I provide for someone with dementia?

Helping someone with dementia is challenging because of the complexity of the disease and the limited treatment options available. However, improving your knowledge of the condition and what to look out for make it easier to detect any disease progression earlier and therefore provide appropriate care and emotional support.

Talking to a person with dementia about how they feel, their symptoms, and what they would like to do can also help them feel in better control of their situation, as well as help keep their healthcare provider updated on their livelihood. Routines and planned activities are also helpful for boosting mental health as well as encouraging collaboration and avoiding injuries or complications.

As a caregiver of someone with dementia, the benefit of taking care of yourself cannot be overemphasised. It would help if you were well rested and at ease as this also ensures that your loved one gets the optimum care they require. Do not hesitate to ask for help when needed because as the condition progresses, you may require all the help you can get in a professional setting.

The Virtual Carers Centre by Dementia Carers Count provides more resources to help care for a loved one with dementia.

​Taking care of yourself For assistance if you are struggling, have questions, or need further help with caring for your loved one, you may contact any of these organizations and support groups below:


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