About dementia

Crisis points

Cognitive loss can cause a decline in independence, social interactions and the ability to achieve fundamental daily activities. These not only create frustration, but have a large impact and increase on their changing needs, such as assistance with their care needs, hospitalisation or entry into care homes.

Dementia progresses over time and can impact many different parts of the brain in different ways, people affected have highly varied needs that can also change over time. This makes it very difficult to offer the kind of tailored, appropriate support that can enable people to continue living at home and doing the things they love.

There is no one size fits all

Beyond the typical associations with memory loss, dementia can affect many different parts of the brain and its effects are therefore highly individual. For some people, one of the first symptoms of dementia is difficulty with speech and word finding, which can have a significant impact on their ability to express themselves and communicate with others (expressive and receptive aphasia). Others may struggle with sensory issues and find themselves easily overwhelmed by auditory and visual stimuli.

People with dementia want to retain their independence

Unfortunately, this journey is often characterised by a series of losses – in abilities, independence, choice and autonomy. Many people with dementia would like to retain their independence, both to reduce the burden on their loved ones and carers, and to retain their own dignity and sense of self. In the absence of a cure, we know that more innovative approaches are needed to help promote independence and maximise quality of life. 

Research from the Alzheimer’s Society in 2022 has identified six transition points corresponding with the NHS England dementia well pathway. At each of the transition points, if the support needs of people affected by dementia are not appropriately identified and met, they are at risk of losing their independence and ability to live well.

Specific examples include:

• Inappropriate, inadequate or timely information and support upon a diagnosis (for example, information on continuing to drive and work).
• Informal caregivers are no longer able to manage caregiving duties; difficulties and barriers in finding appropriate support for keeping loved ones living with dementia at home (shortage of care workers, funding issues, challenges navigating social care).
• Avoidable hospital admissions, worsening dementia symptoms.

People can still live well

It’s important to try to stay positive. Despite its challenges, people with dementia can live fulfilling lives and don’t have to stop doing the things they love. There is practical and helpful support out there for people living with the disease and their friends and family.