Dementia Resources

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.

Urinary and faecal incontinence are common in the older population, yet incontinence is not a normal part of ageing. Dementia can impact upon a person’s ability to remain continent, yet incontinence is unlikely to be a symptom of dementia until the latter stages of disease progression. There is a misconception that nothing can be done if a person with dementia experiences episodes of incontinence. However, many people with dementia often experience functional incontinence caused by immobility, communication difficulties, disorientation, or the inability to find the toilet, which can all be alleviated if the right support and advice is available. Improving the identification, assessment and management of continence issues can not only enable people with dementia to maintain their dignity and improve their health, but also their sense of wellbeing and quality of life. There is also the possibility to improve relationships, reduce carer burden, and reduce the risk of a premature transition into a residential care setting. This fourth paper in the series explores some of the issues relating to dementia and continence and the impact as experienced by our two case studies, Dhriti Singh and Gregory Brewin.

Dementia is an increasingly common condition among the older population. In addition to cognitive impairment, many people diagnosed with dementia will also experience neuropsychiatric symptoms during the life course of their illness. These are referred to as the behavioural and psychological symptoms of dementia (BPSD). The presence of BPSD can be distressing for the person with dementia, their families and carers, and significantly increase carer burden. It is important that staff working in primary, community and social care have an awareness and understanding of the meanings that underlie such behaviours in order to support assessment and subsequent actions, including referral to specialist services where appropriate. This is the third paper in a series that follows two fictional families through case studies to illustrate aspects of dementia care.

Projections suggest that in 50 years’ time there will be an additional 8.6 million people over 65 years old in the UK. As a consequence, England will see an increase in older people who have higher levels of dependency, dementia, and comorbidity. People living with dementia are likely to have on average, an additional 4.6 chronic conditions. However, the true extent of comorbidities experienced by people with dementia may be unreported and underdiagnosed as a result of their difficulties in communicating their symptoms or in others failing to observe them. There is evidence to suggest that people with dementia are less likely to access effective treatment and monitoring of their comorbid conditions compared to people without dementia who have the same comorbid conditions. This impacts negatively on their health and wellbeing. This second paper of the series relating to dementia considers some of the complications that may arise when trying to support people with dementia and comorbid conditions, and how this impacts upon the two families introduced in the first paper.

As the number of people over the age of 65 years increases, so will the number of people with age-related neurological conditions, such as dementia. It is predicted that by 2040, this figure will rise to over one and a half million people in the UK (Arvanitakis et al, 2019). In clinical practice, before the dementia strategy was launched, it was not uncommon to see a case presented to a ‘fast track’ continuing healthcare funding panel, an urgent funding request for end-of-life care, of a person in the advanced stages of an undiagnosed dementia. This meant that their needs for care and support, as well as those of their family members, had been unrecognised and unmet throughout their condition. Timely diagnosis of dementia can lead to several benefits, including access to a pathway of care and a network of services.