Dementia is increasingly encountered in community nursing settings, with an estimated 994000 people living with dementia in the UK at the present time (Wittenberg et al, 2019), being supported by around 700000 family carers. This number is set to rise to 1.7 million by 2050 (Lewis et al, 2014; Carers UK, 2021). Dementia can be defined as a set of symptoms occurring because of brain disease, characterised by a progressive decline in cognitive function including but not limited to memory, reasoning, language and problem-solving skills (Sandiliyan and Dening, 2019). It is also associated with behavioural and psychological symptoms (for example, anxiety or agitation), which affect a person's ability to carry out day-to-day activities and maintain social functioning (Arvanitakis et al, 2019). Dementia is a condition related to age, so is predominantly seen in older adults (defined as aged 65 years or more), but it can also manifest in younger people (under the age of 65 years), which is often referred to as young-onset dementia (Carter et al, 2022). There are many types of dementia, all with their own causes and symptom profiles, but the most common subtypes are Alzheimer's disease, vascular dementia, mixed dementia, Lewy body dementia and frontotemporal dementia (Cullum and Taye, 2021).
There is currently no cure for dementia, although there are medications that can help to slow the progression of symptoms for some people. Interventions often focus on non-pharmacological methods, to help both the person with dementia and their family members manage the symptoms and impact of the dementia, as well as to maintain and improve wellbeing (Meyer and O'Keffe, 2020). Therefore, it is important that community nurses understand the support that might be available to people with dementia and their family carers in their community, as well as how patients and their families can access this support.
This article will describe the impact of dementia on both the person with dementia and their family/carers, and go on to discuss the support available in the community to meet these needs. A case-study approach will be used to demonstrate how the community nurse can support a family affected by dementia to access appropriate support in the community. Case studies can be both educational and informative, and offer a simulation of practice examples which clinicians can identify themselves in or recall similar scenarios that they witnessed or experienced (Seshan et al, 2021). Reviewing case studies offers ideas on how to improve clinical practice and patient outcomes. It can also generate a deeper and multifaceted understanding of complexities encountered in real-life clinical contexts.
Case study
David was 70 years of age when he first started to notice problems with his memory. Initially, this was just forgetting appointments, and occasionally struggling to find the right words, but over time he started to get lost in familiar places. His husband Tom also started to notice these changes. Neither were sure what the process was for seeking a diagnosis, but a friend suggested they call the Admiral Nurse Dementia Helpline (Box 1), who advised them to see David's GP as the first step.
Box 1.Resources to share with family/carersCognitive Stimulation Therapy: https://toolkit.modem-dementia.org.uk/wp-content/uploads/2016/04/CST-Intervention-Summary.pdfSTART strategies for relatives: https://toolkit.modem-dementia.org.uk/wp-content/uploads/2016/03/START-Intervention-Summary.pdfRoyal British Legion Admiral Nurses: https://www.britishlegion.org.uk/get-support/care-and-independent-living/support-for-carers/admiral-nursesAdmiral Nurse Dementia Helpline: https://www.dementiauk.org/information-and-support/specialist-diagnosis-and-support/admiral-nurse-dementia-helpline/
David was referred to the Memory Assessment Service and was subsequently diagnosed with Alzheimer's disease. David and Tom were given some information leaflets and discharged back to the GP. Life continued quite well for a couple of years as the couple adjusted to living with the diagnosis, and found they could continue most of their usual activities.
A couple of years after the diagnosis, things started to become more difficult. David needed more help with his daily living activities, such as getting dressed in the mornings and making meals. As a result, Tom felt he couldn't leave David on his own for long periods of time. David was struggling more to communicate verbally and, as a result, had withdrawn from social activities. Both David and Tom became isolated and lonely. Tom continued caring for David at home but struggled with the physical and emotional demands of caring.
Impact of dementia
Dementia can have a profound impact on those who are diagnosed with it, potentially causing changes in all aspects of their lives, as we see in David's case. However, receiving a diagnosis can have a huge emotional impact, not just on the person with dementia, but on the whole family unit. Progressive cognitive changes can make it difficult for the person with dementia to carry out day-to-day activities, often leading to feelings of frustration and sometimes leading to the person experiencing depression and anxiety (Valkanova et al, 2017). Changes in behaviour can put a strain on relationships, and personality changes can be particularly difficult for family carers to cope with, often leading to a feeling that the person they once knew has been lost, leading to feelings akin to grief and bereavement (Moore et al, 2023a).
As we see in David's case, dementia is a progressive degenerative condition, so care is likely to be needed in managing the activities of daily living. Where such care is provided by family members, it can put an increased strain on the carer and also place them at a higher risk of experiencing depression and anxiety because of their caring role (Farina et al, 2017). Where outside care is needed, it can often have a significant financial impact on the family unit, which is often felt more keenly by those with younger onset dementia, who may still have been in work or have the responsibility of a mortgage at the time of their diagnosis (Kilty et al, 2023). Additionally, people with dementia may also have comorbid conditions, and the presence of dementia can make the management of these more complex conditions (Bergman et al, 2023). It will not be within the remit of the community nurse to respond directly to all of these increased needs, but it is important to have an awareness of the wide-reaching impact that dementia can have on the person with the diagnosis and their family carers, and to be able to identify unmet needs in the people they work with.
Primary care
Primary care is the ‘front door’ to the NHS, and for many people with dementia it will be their first contact with a health professional on their route to getting a diagnosis. The first step for the GP, when someone presents with cognitive symptoms, should be to rule out any other treatable causes for the symptoms. In David's case, the GP ordered some blood tests to rule out other possible causes, such as vitamin deficiencies, which can sometimes mimic the symptoms of dementia (Moore et al, 2023b). David's blood tests came back clear so the GP carried out a basic cognitive test, for example the General Practitioner Assessment of Cognition (GPCOG) (Brodaty et al, 2002), and asked questions about David's symptoms, and corroborated this information by asking Tom about any changes he had noticed in David. A referral was made to the local Memory Assessment Service (MAS) for further tests and investigations. In David's case, he had to access support from a third sector organisation, the Admiral Nurse Dementia Helpline, to find out the process he needed to follow to obtain a diagnosis (see resources in Box 1).
Community nurses are in a good position to recognise the early signs of cognitive impairment, and it is important to have a good understanding of the process of assessment and diagnosis. Such knowledge will enable them to signpost people who are worried about their memory and their family members to the correct services, and to both explain what the process will involve and support them through getting the diagnosis.
The role of primary care does not end with the diagnosis, and, as was the case with David and Tom, most people who receive a diagnosis of dementia are then discharged back to the care of their GP for ongoing monitoring. In most areas this takes the form of a yearly review, not just of their dementia but including any other conditions they may have alongside the dementia (Bergman et al, 2023).
Memory assessment service and community mental health teams
Following referral by the GP, the MAS will be the next service accessed on the route to getting a diagnosis. The structure of these teams will vary locally, but will usually be made up of doctors, nurses, psychologists, occupational therapists and sometimes community support workers. The MAS will provide assessment, diagnosis and treatment to those with a suspected dementia (Gomes et al, 2019). The initial assessment may include history taking, cognitive testing, neuropsychology testing, physical examination, blood and urine tests, assessment of hearing, vision and mobility, computerised tomography scan (CT) or similar of the head, a risk assessment and social care needs assessment (Chrysanthaki et al, 2017). Waiting times can vary across localities, and in many cases have become much longer since the COVID-19 pandemic, so when suggesting a referral to MAS it is important that community nurses manage expectations in the people they work with (Royal College of Psychiatrists, 2022). There is also variation in the amount of follow-up provided, with some MAS providing follow-up appointments and others discharging back to the GP for ongoing management. This will often depend upon whether anti-dementia medication (for example, donepezil) is prescribed or if there are behaviour concerns that require further assessment and treatment.
In David's case, he was offered one follow-up appointment at which he was given information leaflets. In some areas, the MAS may offer interventions such as cognitive stimulation therapy (Gómez-Soria et al, 2023), or psychoeducation groups (Livingston et al., 2013) for carers (see resources). Given the variation in the support offered by MAS it is helpful for community nurses to make themselves aware of what services and support is available for families affected by dementia in their local area, so that they can provide accurate information and onward referral to people they work with who may be undergoing assessment for dementia.
Where MAS do not have an ongoing follow-up and management function for people with dementia, community mental health teams, or sometimes mental health dementia crisis teams, may become involved, particularly where the symptoms of dementia become problematic and there is a need for specialist intervention. David and Tom did not have reason at that time to access such services, but where a person with dementia is experiencing distress behaviours (aggression or agitation), where there are risks present (expression of suicidal ideation) or where the carer is struggling to cope and continue in their caring role, then a referral to community mental health services may be considered (Brown and Harrison Dening, 2023). The route to referral is usually through the GP, but in some areas community nurses may be able to refer directly. Again, community nurses can make themselves aware of the services in their local area, what the referral criteria are and how they can be accessed. These teams will be similar in their staffing to those of MAS, and their aim is to manage difficult symptoms in a person's home, using both non-pharmacological and drug treatments (if needed) to avoid an admission to a hospital or care home. Where symptoms cannot be safely managed at home, they would also plan for the person to be admitted to hospital or a care home and then, in time, may support their discharge back home.
Third-sector organisations
The support provided by third-sector or voluntary organisations, for people with dementia and their family/carers can be wide and varied, depending on the locality. With health and social care under increasing pressure to make cost savings, third-sector organisations are increasingly providing much of the support for families after a dementia diagnosis (Mayrhofer et al, 2023). Examples of the types of support offered can be found in Table 1.
Table 1. Support offered by third sector organisations for families affected by dementia
| Cognitive stimulation or reminiscence activity | These groups are usually for people with dementia and aim to promote cognitive skills and increase wellbeing through social interaction |
| Peer support groups | Offered to people with dementia but also carers |
| Memory cafes | Social groups which can be attended by both the person with dementia and family carer |
| Creative arts | For example, singing or arts-based groups, usually for the person with dementia and their family carers |
| Information and advice | Can take the form of a ‘dementia advisor’, providing basic information on dementia and support available locally |
| Low cost or free counselling services | Often provided by carers' centres locally |
| Financial/benefits advice | Advice for either the person with dementia and/or their carer on benefits available and how to apply |
When we consider the case of David and Tom, we see that David withdraws from his usual social activities because of the effects of his dementia. There are some clear missed opportunities for both David and Tom to have accessed valuable support from third sector organisations that would have prevented their increasing social isolation. While they were given information in the form of leaflets, often families affected by dementia are not receptive to information delivered in this format (Berghout et al, 2023). It is likely much of this information was forgotten or lost, stashed away for a time when they might need it, or misplaced, or they may have felt that it was not needed at the time it was given because they were initially coping well. Thus, it is important that information is both timely and bespoke (Soong et al, 2020; Berghout et al, 2023). If David and Tom had seen a community nurse in the intervening couple of years, there may have been an opportunity to signpost them to support that could have helped them avoid the situation they found themselves in a couple of years on. Social prescribing is another approach used in dementia care, whereby people are linked with non-clinical activities, such as those described in Table 1, with the aim of improving quality of life (Baker and Irving, 2016).
Social prescribing can be carried out by any health professional, but in many areas, there are now specific social prescriber roles with the remit of signposting and supporting access to community services (Percival et al, 2022). Being able to access a memory café may have given David and Tom the opportunity to meet others in a similar situation, helping with feelings of social isolation, and giving David a place to socialise where he may not have worried as much about the impact of his dementia on his communication. Likewise, having access to information and advice services might have given them both information about how to access social care, leading to less pressure on Tom as the main carer and better outcomes for them both.
Things reached a crisis point when David experienced a fall at home. Fortunately, he suffered no serious injuries and could be treated at home. However, he did have a wound on his shin. The community nursing team became involved to change dressings and treat the wound. Tom told the community nurse during one visit that he was not coping with David's care and thought he could not carry on caring for him at home. The community nurse made a referral to the local Admiral Nurse team. As a result of the assessment with the Admiral Nurse, it was identified that Tom needed a break from his caring role if he was going to be able to continue caring for David, and also the Admiral Nurse supported the couple to access a care needs assessment from the local social services department. This resulted in someone coming to help David in the mornings and evenings with washing and dressing, and he also started attending a day centre once a week. Referrals were also made to the falls team who worked with David to improve his mobility, and to the occupational therapy team who provided equipment and adaptations to make things safer at home. The Admiral Nurse worked with David and Tom, both separately and together, to help them improve their communication, cope with the impact of the dementia, and to help Tom to develop strategies for managing his caring role. As a result of this support, quality of life for both David and Tom improved and Tom was able to continue caring for David at home.
Admiral Nursing
Admiral Nurses are specialist dementia nurses who work with the whole family affected by dementia. They deliver evidence-based interventions to support families in developing skills and coping strategies for managing the impact of dementia, as well as providing emotional and psychological support. They work within a relationshipcentred model, and apply a case management approach, helping families to navigate the often-complex health and social care system (Harrison Dening et al, 2017), as in the case study on Tom and David who were supported to access social care and other services. Where Admiral Nurses are community based, they can be found in diverse settings including community mental health teams, primary care, social care and some voluntary organisations (notably, the Royal British Legion that employs nurses to support people with a Forces background and their families) (Box 1).
Admiral Nurses are employed by host organisations, but are supported in their practice development by the charity Dementia UK. The Admiral Nurse Dementia Helpline (Box 1) can advise on service availability in local areas and offer support over the phone or online for families where there is no local service.
Social care
As dementia progresses, people with dementia will need more support to carry out their activities of daily living, and to access social activities. Local Authorities are required to provide a care needs assessmentf or the person with dementia, as well as a carer's assessment for their carer. This considers what support might be needed, which could include help with personal care or nutrition, or support accessing the local community. Social care in England is means tested, so there will also be a financial assessment and people may be asked to contribute towards, or fully fund their own care. In the case of Tom and David, the assessment identified a need for a carer to visit daily to support David with his personal care needs, as well as provision of a day centre, which served to both give Tom a break and provide social interaction for David. Social care provision can also include support with household tasks, such as shopping, cooking and cleaning or engaging with activities both within and outside the home.
Therapy services
There are several community therapy services that may need to be accessed by a person with dementia during the course of their illness. Physiotherapists might be involved as part of a falls team, as was the case with Tom, where they can work with the person with dementia to improve their posture, gait and strength with the purpose of reducing the risk of falling. In some areas, they may also provide community exercise groups for people with dementia. They may also become involved if there are more severe problems with mobility and where advice is needed on how to safely move and transfer the person with dementia if they are completely immobile (Lord and Rochester, 2017).
Occupational therapists work to enhance or maintain the ability to engage in occupation (activities and roles) by working with the person's capabilities and making adaptations to the environment. They also work directly with family carers to help them develop strategies for supporting meaningful occupation in the person they care for (Bennett et al, 2019).
In the case of David and Tom, the occupational therapist was able to carry out a thorough assessment of the home environment, as well as assessing how David managed his personal care routines, and how Tom supported him with those. As a result, David was provided with equipment (including handrails, a perching stool and a raised toilet seat) to make his personal care routine easier and safer, and Tom was given advice on the best ways to support David when moving about and going to the toilet.
Although not accessed by Tom and David in this case study, speech and language therapists also have an important role in supporting people with dementia. They may become involved in the middle to later stages when there are problems with communication, such as dysphasia, and can give advice on communication techniques and strategies to support the person with dementia and their carer. They may also become involved if the person with dementia starts to have problems swallowing, and can give advice on modified diets and fluids (Moorhouse and Fisher, 2017). Support might also be sought from a dietician if there are problems with eating and drinking, or with weight loss or gain.
Other community support services
People with dementia may have quite specific needs around communication (Pepper and Harrison Dening, 2023), and in managing distress and anxiety, which can make accessing services like dentistry, opticians and audiology more difficult. Where there are problems in accessing traditional models of these services, support can often be sought from specialist community services. In most areas, the NHS provides community dental services which can sometime be provided in the persons' own home, and which are specially designed for people who may have additional needs, such as those with dementia. Similarly, many opticians and audiology services will have the option of a home visiting service, and modified assessments for those who have problems communicating or who may find the assessment distressing.
Conclusion
This paper has provided an overview of the types of community support that are available for people with dementia and their family carers. Community nurses are in an excellent position to be able to identify unmet needs in the families with dementia that they come into contact with. It is imperative that nurses have a good knowledge of the types of support that might be available, as well as how to access them. This paper has given an overview, but it should be noted that community provision will vary across localities, and nurses will need to familiarise themselves with the services available locally and their referral pathways. Armed with this information, community nurses have the opportunity to enhance wellbeing for families they work with, by ensuring they can access to the variety of community support available.
Key points
- Dementia is a progressive disease which impacts on functional and cognitive abilities. People with dementia and their famillies will therefore need to access various types of community support during the course of the disease.
- It is important for community nurses to be aware of the different type of support available to people with dementia and their family carers, to be able to identify when support might be needed, and to know how to access it.
- Having knowledge of local support services will allow community nurses to capitalise on health promotion activities when the come into contact with people with dementia and their family carers.
CPD reflective questions
- Think about what you have learned about the impact of dementia on both the person with dementia and their family carers - how might this affect the types of support needed as dementia progresses?
- Consider a person with dementia you have worked with - were they easily able to access all the support they needed? What were some of the barriers to them accessing support?
- Using the list in Table 1 spend some time researching what support is offered to people with dementia by third sector organisations in the area in which you work