Dementia Resources

Storytelling is the act of telling or writing stories, or narratives. Typically, stories are told for entertainment, for informational or educational purposes. Telling stories and storymaking is integral to our human consciousness and lived experience

It is estimated that there are currently 944,000 older people living with dementia in the UK, and that 593,200 of those people are living with advanced symptoms. People living with advanced dementia have a significantly higher prevalence of pressure ulcers (PUs), compared to those living without dementia with similar comorbidities. The care and support required to prevent pressure ulcers in people living with dementia needs to be individualised, following a holistic and person-centred assessment of the person and their unique circumstances. An improved understanding of the increased risk and causal factors of developing pressure ulcers in high risk groups, such as people living with advanced dementia, can support practitioners to conduct a more through and person-centred risk assessment and management plan, including choosing the most appropriate products to meet a person’s needs.

Over the past decade, the author believes that society has begun to awaken to the
transformative power music can have both for those living with dementia, and those who care for them. There have been a number of viral news stories which have really captured the nation’s hearts and brought us all to tears — think of Paul Harvey with his beautiful Four Notes improvisation and Marta C Gonzalez, a forma prima ballerina living with Alzheimer’s who became animated listening to Swan Lake.

The number of people with dementia is expected to increase with a consequential effect on the wellbeing of families and increasing pressure on an already over-burdened health and social care system. Risk factors for dementia, both modifiable and non-modifiable,
if appropriately understood and identified are amenable to management and amelioration. Community and primary care nurses are in an ideal position to support the reduction and management of risk pre and post dementia diagnosis. Using a case study, this paper highlights some of the issues in identifying, assessing and managing risk in a person with an existing diagnosis of dementia and their family/carer. The potential for dementia-related risks to escalate can have a much wider impact on a family unit if not appropriately identified, managed and mitigated against. 

There are many challenges in providing palliative and end-of-life care to people with dementia; some of which may be reduced through advance care planning (ACP) to support the person with the diagnosis to have a greater influence on their care at end-of-life.
Advance care planning has been defined as a process of discussing and recording wishes, values, and preferences for future care and treatment held between an individual, family members and their care provider(s) that takes effect when the person loses capacity. This
paper considers some of the barriers and enablers to lead to better support of ACP in families affected by dementia.

Globally, there are more than 800 million people aged over 60, which equates to approximately 12% of the world’s population. This figure is expected to grow rapidly, with studies estimating that by 2050 numbers of older people will reach two billion (United Nations [UN], 2015). The UK has a higher than the global average older population.

The population of the UK, as with other developed nations, is ageing. Estimates show that in 50 years’ time, there are likely to be an additional 8.6 million people aged 65 years and over living in the UK (Office for National Statistics [ONS], 2018a). The increased ageing and morbidity of our population is driven by several factors.

There are estimated to be 900,000 people with dementia in the UK and indications are that this will increase to one million people by 2025 and two million by 2051 (Wittenberg et al, 2019). The majority of people diagnosed with dementia live in a community setting, whether that is in their own home, sheltered accommodation, hospice or a care home; indeed, there are few health and social care services where people with dementia are not to be found, and, as such, dementia is everybody’s business.

As the population continues to age and the incidence of dementia and associated costs increases, there will be a greater need for unpaid care with research suggesting that one in three of us will become a carer for someone with dementia during our lifetime. It is estimated that there are in excess of 700,000 people in the UK acting as primary unpaid carers for people living with dementia, all of whom make a substantial contribution to their care and support. Carers of people living with dementia can experience high levels of carer burden alongside poor health and wellbeing because of their caring roles. However, they may not identify themselves as carers or be recognised as such by health and social care professionals. Consequently, they may not have access to the support they need, thus identifying and valuing unpaid carers is the first step in supporting them. Community nurses are well placed to do this. This sixth paper relating to dementia considers the contribution of unpaid carers in the context of the families of Dhriti Singh and Gregory Brewin, who we have been following throughout this series.

When a person experiences symptoms that are suspected to be a possible dementia, they may be referred for specialist memory assessment. However, in the initial diagnostic stages, delirium and depression are differential diagnoses that require consideration, with attention paid to ruling these out as they can mimic the presentation of dementia. Similarly, delirium and depression can be superimposed on a person who already has an existing diagnosis of dementia. In both instances, this can be distressing and debilitating  and requires community nurses to be able to differentiate between the conditions and to take appropriate measures to enable rapid identification and assessment and, when required, onward referral for treatment and management. The differentiating signs and symptoms of the three conditions can vary in their subtlety and similarity and require vigilance to identify in a timely manner. Community nurses have a significant role to play in the screening, identification, assessment and management of patients with dementia, delirium and depression. This paper is the fifth in a series that follows two patient stories in their experiences of dementia.