Question

What are the steps you would take to uphold the four critical values when working with Alzheimer’s or dementia patients?

Answer 1

Dementia care is daunting, but may not be as challenging as you would expect. Whether you care for a parent or senior loved one with Alzheimer’s disease or another type of dementia, or are a senior care professional approaching your role with some knowledge — the right attitude is crucial to success.

Although most people with dementia live independently or with minimal support, around a third live in care homes and, while nurse education places high value on the attitudes and skills needed for best practice, this has not always been reflected in the care provided on the ground. This series aims to provide an up-to-date guide to dementia and dementia care for nurses in any setting.

Educating yourself about dementia and maintaining a positive but realistic attitude allows you to maintain an element of control as a caregiver. It can take the sting out of surprising challenges you encounter and also improve the care that you provide.

The risk of developing dementia increases with age, as does the risk of developing long-term conditions such as arthritis, diabetes and cerebrovascular or respiratory problems. ‘Old age’ occurs earlier for people with learning disabilities, and this group is particularly vulnerable to cognitive impairment. People with dementia therefore often have co-existing problems, or comorbidities. At any time, 25% of patients in a general hospital may have dementia and this group is at higher risk of readmission and death than other patients admitted with the same conditions – this means the identification and care of people with dementia is a crucial responsibility for nurses.

Responding to the complex combination of comorbidity and polypharmacy, particularly in environments that may be unfamiliar to the patient, means caring for people with dementia can be a challenge for the nurses aiming to provide high-quality care. Nurses can respond to the needs of people living with dementia using a person-centred approach, which involves developing a therapeutic relationship and getting to know the individual’s life story and preferences.

An important aspect of the nurse’s role is to observe and report any potential signs of underlying dementia. However, although early diagnosis leads to better treatment options and advance decision making, the condition is currently underdiagnosed. The assessment process is complicated because of mixed factors – such as being in unfamiliar environments, having a high temperature or constipation (which can lead to delirium), and depression – have overlapping symptoms, which can be easily misinterpreted. If a patient is withdrawn, anxious, seems lonely, has no appetite, is agitated and upset, and asks the same questions repeatedly, the signs could indicate delirium or depression as well as dementia. It is also possible to have more than one condition concurrently.

Accurate diagnosis of dementia, depression or delirium is the key to correct treatment, and nurses in any setting who are observant, empathetic and trusted by patients are ideally placed to identify problems. People with dementia will feel safe with a trusted and familiar nurse, and be more able to:

• Speak honestly about their concerns;
• Allow the nurse to help them with personal care.

If a patient is diagnosed with delirium, the underlying physical problem must be addressed urgently (for example antibiotics to treat an infection). Patients who are depressed should be offered psychosocial interventions such as befriending, antidepressant medication and psychological therapy such as counselling.

Similarly, if a patient has been diagnosed with a form of dementia they will usually be offered anti-dementia medication. The team should also make dementia-friendly adjustments to their approach and the environment – be they in a hospital or care home – to help them maintain a maximum level of functioning and quality of life. This can be done by ensuring:

• Their bedspace is easily differentiated from others through the use of colour or pictures;
• Their bedspace is near a clearly signposted toilet;
• Levels of light are good.

Here are some important facts to consider when approaching your role caring for someone with dementia:
1. Accept support.

Whether you are caregiving for someone in your family, or whether you provide care professionally, never be afraid to ask for help. Many family caregivers find support groups immensely helpful. Support groups allow caregivers to vent in a group setting with people who understand what one another is going through. It also allows caregivers to hear what is working for other caregivers and learn about local Alzheimer’s and dementia resources. Similarly, professional caregivers shouldn’t be reluctant to ask a colleague for support when facing an exceptional challenge or difficult time. Caregiving for someone with dementia is not easy and there will certainly be moments when professional caregivers need a hand or someone to talk to.

2. Actively empathize.

Care starts with compassion and empathy. This holds true in all human relationships but may be especially salient for dementia caregivers. For example, people with dementia are prone to becoming confused about their whereabouts and even the time period in which they are living. For instance, imagine how you felt and would want to be treated if you suddenly found yourself disoriented in an unfamiliar place, not even sure of the year or even your own identity.

3. Be a realistic caregiver.

Be realistic about what constitutes success during the progression of the disease. Success is helping to assure that the person you are caring for is as comfortable, happy and safe as possible. Most experienced dementia caregivers will tell you that the person they care for has good days and bad days. Try your best to foster the good days and even the good moments for the person with dementia, don’t try to force them. Also, be realistic about the course of the disease. Remember that most types of dementia, including Alzheimer’s, are irreversible and progressive. Dementia will tend to get worse over time and there is no known cure. (A prominent exception is dementia induced by medications, which can be reversed when medications are withdrawn.)

4. Dementia is more than memory loss.

Memory loss is a classic dementia symptom. But some types of dementia, particularly frontotemporal dementia and Pick’s disease, manifest themselves as personality changes rather than memory loss. The symptoms depend on the areas of the brain that is affected by the disease. Even when memory loss is the most apparent symptom, the person with dementia is experiencing a neurological decline that can lead to a host of other issues. A patient may develop difficult behaviors and moods. For example, a prim and proper grandmother may begin to curse like a sailor. Or a formally trusting gentleman may come to believe that his family is plotting against him or experience other delusions and hallucinations. In the latest stages of most types of dementia, patients become unable to attend to activities of daily living (such as dressing and toileting) independently. They may become non-communicative, unable to recognize loved ones and even unable to move about.

5. Plan for the future.

The only inevitable is change when you are caring for someone with dementia. Never get too used to the status quo. That means that family caregivers should prepare for a time when their loved one may need professional memory care in a residential setting. This involves both financial planning and identifying the most appropriate care options in your area. Professional caregivers and memory care providers also need to plan ahead. They should be mindful to continually reassess the care needs and health status of clients and residents with dementia. Remember that care needs will inevitably increase and plan ahead for any transitions that the resident may require in the future, such as a move to a skilled nursing provider or hospice care.

At present there are no cures for dementia, but there are four medications licensed in the UK that may slow its progress. It is part of the nurse’s role to explain medications together with their side-effects to patients and family members; clear explanations aid decision making and are the basis of informed consent.

Nurses should also know where to find further information (for example, the British National Formulary online) and how to direct people to more information or support (for example, charities like Alzheimer’s Society). As well as being familiar with online resources, they should also know about local agencies as not everyone has internet access.

Understanding how medicines work is extremely useful, particularly when responding to a patient or family member’s questions. The cholinesterase inhibitors used to treat dementia (donepezil, rivastigmine and galantamine) work by preventing the breakdown of the neurotransmitter acetylcholine, which is needed for cognitive function. The drug memantine works differently, by disrupting the release of toxic levels of glutamate, which damages brain cells.

People with dementia often have problems taking medicines due to poor short-term memory, which means they may forget to take them or have already taken them and inadvertently take an additional dose. Asking to see a patient’s tablets can help nurses gauge whether they are taking them appropriately; if they are, it is best not to interfere as they obviously have a system that works for them. However, if there are too many or too few tablets left in the packet compared with prescription dates, it may be useful to ask how they are coping with their medicines and suggest they consider a dosage system, such as a blister pack arranged by their local pharmacy, an assistive technology device or the help of a family member or carer.

People with diabetes who have managed that condition effectively for years may find doing so more difficult as they develop the memory problems associated with dementia. They may forget to eat properly or take their medication regularly, and may not recognise the signs of hypoglycaemia or communicate their needs effectively. Poorly controlled glucose levels can affect orientation and memory, while the risk of hypoglycaemia is greater if insulin is taken more often than prescribed. Assistive technology can be used to prompt injection times but, as time goes on people with both dementia and diabetes will need more support to manage their treatment.

The therapeutic relationship between nurse and patient is central to high-quality nursing care. Communicating warmly, showing appreciation of patients’ individuality and recognising their strengths can help them feel included and valued. Simple adjustments that can help to improve communication with people who have short-term memory issues include:

• Using short sentences;
• Using familiar vocabulary;
• Using a warm tone;

Smiling during conversation. It is important to leave time for them to reply, and to listen carefully, responding to the emotion expressed if the content of speech is unclear (for example, “You sound happy/upset about that”). It is best to avoid questions, especially if the patient is unlikely to know the answer; instead, statements can foster inclusion while not being too demanding (for example, “We will all be happy when this cold weather is over”.)

In the later stages of dementia when the memory has deteriorated further, patients may call for their mother or insist they go home to cook their husband’s tea, for example; this can be difficult for nurses, especially if they know the parent or spouse has died. Rather than hiding the truth, however, it can be better to think about what the underlying emotion or need might be and respond to that – for example, “I’m sorry, she’s not here, but I am. You’re safe and I’m going to be with you all evening”, followed by a distraction, such as “…and I could really do with a hand folding these towels”). Use of reassuring touch is acceptable where appropriate; patients will usually make it clear if they are not comfortable with a hand on their shoulder or their hand being held.

Nurses can also learn to “listen” to the behaviour of patients with dementia (for example, constantly walking may be due to pain, looking for someone or feeling bored or constrained). Imagining how these patients might be feeling – perhaps lost, alone and frightened – can help nurses to empathise and respond compassionately. Similarly, if they are unable to communicate verbally, their behaviour may provide clues about their feelings and needs. For example, interpreting behaviour perceived as challenging as an indication of distress is the first step in considering a response that might help people feel safe, comforted and included.

Hospital environments tend to be noisy and fast-paced and therefore difficult for people with dementia to cope with. However, the environment itself can be used to provide practical cues – for example, patients are more likely to remain continent if toilets are clearly labelled. Whether in the hospital or home, adjusting the surroundings can result in a more dementia-friendly environment. This includes:

• Slowing and quietening the pace of life, for example through care planning, stopping to talk to patients and avoiding rushing when nearby;
• Providing plenty of light;
• Ensuring the decor conveys safety and comfort by using soft furnishings and muted colours;
• Orientating patients via clear signs for toilets, bedrooms and kitchen areas.

Design can also facilitate independence: using contrasting colours to delineate door frames and separate areas will help patients move around a unit or home without risk. Similarly, placing personal items such as photographs at the bedside and using name signs on bedroom doors will help them to identify their own space. Assistive technology can also minimise unnecessary disturbance at night – for example enuresis detectors and automatic lights enable staff to respond when needed but otherwise allow patients and family carers to rest.

Most people would prefer not to be exposed in front of a stranger, yet people with dementia are asked to do this when being helped with personal care. This can be made easier if nurses use a warm, reassuring approach and ensure the patient’s body is covered as far as possible. It is also important that staff members are allocated consistently so they become familiar to patients and gain an appreciation of their personal care preferences – for example, like whether they prefer their hair to be brushed in a certain way or have favourite clothes.

Working with people who have dementia is challenging and fulfilling. As the population ages, providing effective person-centred care in a range of specialist fields for people with dementia will become essential for nurses. The ageing demographic means dementia care skills have become core skills. However, managing people with dementia requires patience, empathy, sensitivity and dedication; as such, it is important that nurses look after themselves and each other via peer support and mentoring, and extend this support to multidisciplinary colleagues. The skills nurses develop while caring for people with dementia, such as sensitivity, compassion and empathy, are core qualities that all nurses should value as professional strengths. Similarly, the ability to listen and communicate effectively, provide care that meets patients’ needs while recognising their individuality, and support family carers, are central to the wellbeing of people with dementia.