As a person travels the journey of dementia, the impact of the condition will affect their physical, emotional and intellectual abilities, and the risk of increased complications of frailty such as, chest infections, urine infections, falls, constipation and pressure damage increases. Frailty is now recognised as a distinctive health state related to the ageing process in which multiple body systems gradually lose their inbuilt reserves [1]. Older people who live with frailty will have multiple conditions which may cause the diagnosis or management of any particular condition to be masked or harder to identify. For people living with dementia in care homes, the opportunities for them to undertake normal life activities that can assist in staving off or reducing the risks of physical or mental health conditions occurring are reduced. The impact of institutional living coupled with the progressive nature of dementia can complicate opportunities for both diagnosis and the management of conditions.

Care homes should be a place where the person not only receives care to manage the physical or cognitive consequences of dementia, but where they are supported to flourish, within their capabilities, and where the speciality of long-term care encompasses the support of quality of life and well-being alongside any physical or mental health conditions.

This chapter will explore some essential aspects of care and suggest how the qualities of the staff, the environment and the milieu can be used to benefit people living with dementia. So often the value of the physical environment is not considered as essential, except in respect of orientation and reducing distress. Whether a primary care professional is assessing a person’s needs, is responding to concerns regarding their health or is involved in commissioning or contract monitoring the service a resident receives, the impact of the environment and activity on the person’s quality of life and well-being should be central.

There are increasing numbers of regulatory and commissioning organisations who are developing competencies for staff who work with people with dementia in care homes. However, the focus is too often on ensuring that care workers respond to physical needs in a competent and person-centred way. While responding to physical need is a vital component of care, the importance of meaningful activity on physical and mental health is often overlooked or seen as something that is only relevant to an overall need for occupation. There are scarce examples of standards which measure how staff can demonstrate competence that incorporates an understanding of the wider benefits of the environment, the milieu and meaningful activity on the health of older people who live in care homes.

The guidance produced by the National Institute for Health and Care Excellence (NICE) on the mental well-being of older people in care homes is an important source designed to drive measurable quality improvements within a particular service [2]. The guidance sets out a concise set of six statements reflecting standards on:

  1. 1.

    Maintaining personal identity

  2. 2.

    Recognising signs and symptoms of a mental condition

  3. 3.

    Support of sensory impairment

  4. 4.

    Support of physical problems

  5. 5.

    Participation in meaningful activity

  6. 6.

    Access a full range of healthcare service

NICE highlights research which evidences that many older people are dissatisfied, lonely and depressed and many are living with low levels of life satisfaction and well-being. They refer to additional research, for example, from the Alzheimer’s Society which shows that many care homes do not have enough activity or ways of positively occupying residents’ time, coupled with poor access to NHS primary and secondary care services. Lack of activity and limited access to essential healthcare services are shown to have a detrimental impact on a person’s mental well-being.

Meaningful activity is described by the NICE as activities that include physical, social and leisure activities that are tailored to a person’s needs and preferences. Activities can range from activities of daily living, leisure, gardening, reading, arts and crafts, conversation and singing. An activity can provide emotional, creative, intellectual and spiritual stimulation and should include using outdoor spaces.

The NICE further describes mental well-being to include areas that are key to optimum functioning and independence, such as life satisfaction, optimism, self-esteem, feeling in control, having a purpose in life and a sense of belonging and support.

1 Traditional Approaches to Well-Being and Quality of Life in a Care Home

Traditional approaches to activity and the expected norms of promoting quality of life in care homes may include group activities following a standard timetable and an activity that has, as its common denominator, something that everyone can do. In a traditional culture of care, little attention is paid to the desires, intellectual ability or interests of the resident. Activities are ‘done to’ a person rather than with a person. Musical entertainers who lead ‘sing-alongs’, group quizzes and the television playing daytime TV are examples of entertainment designed for everyone.

Gardens too may be accessible, but in more traditional care homes, they are not considered as ‘a room without a roof’. Rather, they are more likely to be used when the sun is bright, and residents can be placed under a parasol rather than sit in the lounge.

The physical environment in the care home may have paid little attention to the impact of factors such as light, noise or age and culturally appropriate furnishings. Cultural diversity may be most likely to be understood in respect of black and minority ethnic people but fails to pay attention to ensuring that care staff understand the culture of local residents including local history, food, festivals and events. There are very few induction programmes, for example, where care staff from overseas are helped to learn about the culture and traditions of the place they will live and work or helped to understand information that may support them to converse with a local person living with dementia about their life, work and pastimes.

2 Changing Cultures of Care to Promote and Support Quality of Life and Well-Being

Changes in traditional cultures of dementia care have been developing since the 1990s and focus on the need to value the person as an individual. The importance of personhood as a central theme aims to ensure that person who lives with dementia is not undermined and lost within the disease and medical management [3, 4]. Supporting quality of life through meaningful activity and an enriched physical environment has also developed and, in progressive care homes, reflects the developed understanding of how meaningful activity and the environment impact on quality of life which in turn impacts on the physical and emotional well-being of the person and their families.

The need for physical activity is better understood and is now supported by national guidance identifying the need for older people to be moderately active for 150 min a week to improve balance, coordination and strength. The benefits of exercise offer opportunities for social contact, engagement and communication [5]. The therapeutic value of the garden can bring benefits to people with dementia in a variety of ways, not simply to obtain fresh air and natural sunlight. The design can provide passive or active space, sensory stimulation and opportunities to walk and assist with gardening activity according to interest and ability [6].

The use of technology is becoming popular in specialist care homes for people with dementia: supporting activity with game consoles which encourage communication, coordination and sociable fun. Tablets are used to access resources that are online to encourage conversation, reminiscence, films or music, family photos or even direct contact with families abroad via web-based visual communication [7]. For people with advanced dementia, programmes are being developed to enhance the senses and give compassionate care. For example, the Namaste care programme (the Hindu greeting meaning to honour the spirit within), focuses on meeting the needs of attachment, comfort, identity, occupation and inclusion [8].

The impact of the environment has also become better understood. It is now appreciated that a person with dementia may have a reduced stress threshold to environmental stimuli, such as the noise of call bells, machines, office chatter and equipment or the motion of people through a living area. Some research suggests that continuous exposure to noise can increase alterations in memory and increase agitation, reduce tolerance of pain and increase feelings of isolation [9]. The impact of light and lighting is also more fully appreciated. For example, the benefit of natural light enhancing a room while avoiding glare and the importance of having enough bright light and using task lighting in areas where residents are doing activities are grounded in evidence.

The need to balance risk and potential benefits of any activity should always be considered in collaboration between the individual, family carers and any other involved staff. The promotion of risk taking rather than being risk averse can enhance quality of life and improve well-being but requires positive understanding of the importance of quality of life, sometimes outweighing the importance of trying to achieve total safety [10].

3 Assessing Common Health Problems Where Poor Quality of Life and Well-Being May Be a Hidden Factor

Primary care professionals are regularly asked to attend a person in a care home who is experiencing problems such as continence difficulties, constipation, falls, poor nutrition, urinary tract or chest infections, sleep problems, the development of pressure ulcers, distressed behaviour or the management of pain. The traditional and usual assessment process will be to consider the presentation by assessing the physiological aspects of the presenting problem, with a review of medication, nutritional intake, weight and perhaps pain or other attributed factors.

But many of these common problems become exacerbated by lack of activity and psychological engagement. If the person is unable to initiate their own activity due to their cognitive impairment, the spiral of dependency can escalate, as a sedentary life leads to boredom, sleepiness, lowered self-esteem, loss of appetite and lowered nutritional intake. These initial factors can then lead to increased dependency as mobility becomes more impaired, which leads to increased risk of pain, continence difficulties, sleep difficulties, constipation, increased cognitive decline and risk of pressure damage [11]. While continuing to consider physiological factors, primary care professionals should consider how quality of life for the person in the care home may be impacting on their physical and mental health and should consider reviewing the psychosocial aspects of care before resorting to, or alongside, more orthodox approaches. Set out in Box 24.1 are some examples of factors that may affect a person health that could be considered when assessing and treating a person for some common concerns.

Box 24.1

Common causes for GP referral, quality of life factors that may be important

Problems of continence and constipation

 Signage to the toilet should be clear and use both words and symbols

 Malodours should be managed so that the person is not distressed by using a toilet that others have used

 Staff should use language that the person is familiar with

 Activities should be encouraged that support physical movement

 Clothing, including any continence aids, should be easy for the person to manage themselves

 Residents that cannot move about may benefit from abdominal massage on a regular basis

 Fresh fruit and vegetables and fluids should be available in all public spaces and encouraged throughout the day

Falls

 Lighting and floor contrasts should be audited in areas where falls occur

 Rails should be fitted at hand height on corridors and walk ways and places to rest should be readily accessible

 Floor covering should be considered along with foot wear and the use of mobility aids

 Signage should be available (words and symbols) throughout the home (e.g. to the toilet, the dining area, bedrooms)

 People who have difficulty locating their room should have easily identifiable room doors

 People should have access to outdoors and opportunities for walking, outdoor activity, exploring, fresh air and sunlight

 Opportunities for activity should be encouraged as an integral and normal part of the day for all residents; exercise should be encouraged to maintain balance, muscle strength and intellectual stimulation

Appetite and drinking

 Inviting smells of food may assist in promoting an appetite and encouraging a natural biological awareness of the time to eat

 Portion size and presentation should be appropriate and the texture of the food should be correct to encourage appetite

 Snack and finger food may be a better alternative for a person who cannot manage a ‘normal’ meal

 Full fat milky drinks and fortified meals could be tried before resorting to nutritional supplements

 The lighting, noise levels, table settings, atmosphere and care culture of the dining room and mealtimes should be audited regularly against the well-being and nutritional intake of residents

 Picture menus or showing food presented on plates can assist in understanding and making food choices

 Eating and drinking can be encouraged through social events and cooking activities. For example, tea dances, party nights, peeling vegetables or making cakes

 Monitoring snack foods given to the resident by families prior to meals, particularly if the person has abnormal blood glucose readings and there is no simple explanation

 Enabling residents to help with laying the tables or clearing away afterwards

 Encouraging and supporting physical activity, including time outdoors, to promote appetite and hunger

Problems with sleep

 Fresh air and activity during the day may help a person to become tired

 Encourage activities where possible such as raking leaves, sweeping, dusting, pegging out laundry or helping to push trolleys

 Ensure good sleep hygiene and, as far as possible, follow the preferred routine of the individual person; for example, does the person prefer a particular nighttime drink? Do they like a cool room? Music?

 Noise, light, ventilation should be considered

 Consider night time pain, joint stiffness or the need to go to the toilet that may cause disturbed sleep

 Quiet music, talking books or gentle soothing sounds may help settle the person, after a cup of hot chocolate

 Consideration of biographical continuity is important. For example, has the person worked night shifts? Have they typically been ‘poor’ sleepers or preferred to ‘burn the midnight oil’?

 Staff may need to consider enabling the person to be up at night and sleep during the day, ensuring the day is set around the person

Problems with distressed behaviour

 Behaviours that cause distress should be carefully recorded and antecedents should be considered (e.g. time of the day, staff involved, their approach and responses to the person, how long it goes on for). Analysis of these factors will support any intervention

 Physical factors such as pain, constipation and infection may be important

 Is the person experiencing anxiety or depression?

 What might the person be communicating by their behaviour? (refer also to Chapter 24: Communicating with People Living with Dementia)

 Psychosocial care should include consideration of individual biography and factors which may cause distress, occupation and activity, comforting and reassuring care and support and social networks and support

In conclusion, this chapter has briefly reviewed the importance of the physical and care environment, including awareness of meaningful activity as a means of supporting and encouraging well-being and quality of life for people living with dementia in care homes. While considerable progress has been made in challenging traditional approaches to care, there is still work to be done. Primary care practitioners have an important role to play in asking questions about the care and psychosocial support that residents receive in the care home. A commitment, for example, to providing meaningful activities as part of the day rather than assuming that residents can be corralled into timetabled, group activities may play an important role in promoting well-being and ultimately reduce calls on the time of primary care practitioners.

4 Case Study

Senga Williams moved to a care home after repeated episodes of being found outdoors, often lost, and not dressed for cold weather. It was felt by her family that she would be safer in a care home environment. Senga has not settled well in the care home and appears agitated and restless and spends most of her time on her feet, walking about. Staff perceived Senga’s behaviour as ‘wandering’ (i.e. walking without purpose) and asked the GP to visit as she had lost weight. The GP asked about Senga’s biography, and it was evident that care staff had not asked about Senga’s past life, her work and family history and her likes and dislikes. Further investigation revealed that Senga had been a postwoman and had walked a long postal round every day of her long working life. Moreover, she was a keen walker when not at work. The care staff worked to develop a care and support plan which included asking Senga to sort and deliver the post and newspapers in the care home each morning, going out with care staff when they went out for shopping or to run errands, encouraging Senga’s family to walk with her and encouraging Senga to work in the garden whenever possible. These activities did not entirely resolve Senga’s apparent restlessness, but she appeared more settled. This was evidenced by, for example, an increase in her ability to sit at meal times and eat; providing snacks and finger foods for Senga to take with her when she was walking, and some improvement in sleeping and some weight gain.

5 A Quick Audit for Busy Primary Care Practitioners

Box 24.2 is about quality of life – impact on health and well-being audit.

Box 24.2

Quality of life – impact on health and well-being audit

 

Quality of life and well-being activity

Evidence in the care home

1

What can the staff tell you about the person, their character, their interests and their past life, not simply about their medical condition or physical care needs?

 

2

What can the staff tell you about the person and what makes them laugh or smile?

 

3

Can the staff tell you how involved the family are and how they like to share the persons care and meaningful activity?

 

4

How does the atmosphere feel in the public areas of the home? Calm, positively engaging? Noisy and distressing? Soporific?

 

5

As you look around, are any residents ‘helping staff’ in any way or engaged in meaningful activity?

 

6

As you look around, are residents engaging in any activity that appears to be unique to them (rather than general group activity)?

 

7

Can the residents go outside to get fresh air, and be safe?

 

8

When did the resident you are visiting last go out in the fresh air? Do you feel this is adequate considering the weather or health condition?

 

9

How has the resident been engaged in activity/occupation over the past week that:

 (i) Encouraged physical activity

 (ii) Stimulated the senses

 (iii) Engaged in meaningful intellectual stimulation (appropriate to their cognitive ability)

 (iv) Engaged with the community or environment outside of the main living area

 (v) Supported positive engagement and communication with family/friends or people other than staff

 

10

How have the staff been using psychosocial interventions to improve or support the physical or mental health concerns?