Health and social care support for people with dementia
Person-centred care
Understanding people’s care and support needs
What is the impact of a poor understanding of care and support needs?
People with dementia may be less able to communicate their care needs, so may be reliant on family and carers to advocate for them. We saw this happening in feedback we received across all care settings. However, not everyone will have someone to speak up for them.
Analysis of comments from the Adult inpatient survey indicates that acute hospital staff do not always understand the specific care needs of people with dementia. The busy, often frenetic nature of the acute environment can lead to the needs of dementia patients being overlooked.
Being the wife of [the patient], I did feel that doctors and nurses did not fully understand patients with dementia. I realise this was not a purely dementia ward, but felt a little more understanding should be given.
Understanding that people with dementia may have continence issues was also lacking in some cases. The typically long waits in the emergency department (A&E) meant people needed to use the toilet during their visit. However, sometimes this was not prompted by staff and those who needed or requested support to use the toilet did not always get it.
The worst thing was she was asking, then begging, then crying for the toilet, ended in wetting and soiling herself.
Continence care was also raised as an issue in adult social care, through Give feedback on care. People highlighted cases of people with dementia being left for several hours in wet pads or people having long waits to be helped to the toilet and therefore soiling themselves.
I actually went into the bedroom to see mum slumped on the edge of the commode, not sat on it correctly. She had actually urinated on the bedroom carpet due to incorrect positioning on the commode.
These issues clearly have a strong impact on people’s right to privacy and dignity, but could also create wider risks around infection control and tissue viability concerns, as some people suffered skin damage.
People with dementia are often not able to deal with their everyday needs without support. Give feedback on care respondents also said that often adult social care staff were not adequately attending to people’s day-to-day care needs. This included support with nutrition and hydration.
Dad was not encouraged to eat in the dining room which isolated him. Staff didn't encourage him to eat or drink. A water bottle had been in his room for 2 days, so his fluid intake was not monitored.
Other negative comments included making sure food is appetising, appropriate and in reach of people. We also received comments about not monitoring weight and people being left in food-stained clothes.
Poor nutrition represents a serious risk to the overall health of people. We were told of examples of people becoming dehydrated, rapid weight loss and requiring hospital care.
What demonstrates a good understanding of care and support needs?
In contrast to the issues raised above, positive feedback to our Give feedback on care service shows how important a person-centred approach is in providing people with dementia with good care and support.
Mum is quite a quiet person and loves that she can choose to eat in her room or downstairs. For the first week or so Mum ate all meals in her room but the team encouraged Mum to go down to lunch, which she now really enjoys as she is getting to know others, but appreciates having her breakfast and tea in her room.
Everyone has a life story and the adult social care services that support people with dementia well recognise this. In these services, we found that staff support people to maintain their routines and engage in the everyday activities that characterised their lives. For example, an inspector described seeing one woman going around her care home cleaning, as that made her happy; for others their routines included going for a morning walk or checking the post – whatever it takes to maintain a sense of ‘self’.
Relationships and family life are likely to be a part of a person’s sense of ‘self’. Services, particularly in adult social care, that understand the importance and impact of this can support people to handle the life changes that dementia can bring for both the person and their family.
Adult social care provider information return:
A resident with advanced dementia has a key worker that buys anniversary, birthday cards and flowers so he can give them to his wife when she visits on these special days. This has had a positive impact on her emotional well-being as she has suffered from ‘guilt’ because she was no longer able to care for him herself in their home.
Findings from our inspections of outstanding services also highlighted where staff understood people’s personal histories and used this to adapt to their care and support.
Adult social care providers tell us about how they consider the whole person when thinking about the needs of people with dementia. This includes, for example, considering the age of the person with dementia when planning their care.
Adult social care provider information returns:
We support a person who is around 60 years old and has dementia. She does not recognise that she has the condition and is fiercely independent and very particular about the staff who support her. She does not like to be supported by staff who are very young as she feels that she is 'old enough to be their mother' and that she does not have things in common to talk about.
You have to consider age and abilities when supporting individuals living well with dementia. For example, individuals can believe they can still play football as they did regularly at a much younger age. Clearly, that is not possible, but it doesn't mean they can't play football, so this needs to be planned and arranged so they can still enjoy the experience.
Our focus groups with CQC inspectors discussed how good and outstanding dementia care happens when services recognise that dementia is a journey and people change medically and personally over time. As a result, care needs to adapt to reflect the changes in people’s circumstances. One example was given of a person living in a care home who liked to be up and about at night, despite not having a history of night shifts or similar. Rather than insist on a ‘normal’ routine, the staff would sit with her and do creative things – making the most of the quiet and space.
We have seen above how incontinence, associated with dementia, can have a real impact on people’s dignity, as well as their health and wellbeing. Inspectors have highlighted in inspection reports of care homes that care predominantly for people with dementia, how staff can be committed to promote people's independence and dignity. For example, one person living at a care home was reluctant to take a medicine to resolve constipation because they’d had a bad experience in the past and feared being left in an undignified situation. Care plans showed how staff had sensitively reassured and guided the person in the importance of symptom management and the support staff would offer them. This is one example of care staff considering people’s previous experiences to ensure the people in their care were treated sensitively and with dignity.
Communication
What is the impact of poor communication?
Effective communication is a central element of good dementia care. This includes communication between professionals to enable joined-up care, and between health and care staff and people with dementia and their families and carers. Respondents to the Adult inpatient survey often indicated that communication between staff and patients was poor, and family members and carers felt they were not consulted on their loved ones’ care and treatment.
Respondents also said they felt communication between staff was poor and they felt they were given conflicting information, which increased their concerns around the treatment people were receiving.
The importance of good communication and the effect of poor communication was also expressed in the Urgent and emergency care patient survey. For example, one respondent told us how it seemed staff felt communication wasn’t necessary due to their mother’s dementia, while another said decisions were taken without proper explanation. Others said staff didn’t seem to realise they may not be understood or appeared to lack time to be sympathetic or patient.
The people treating him didn't know how to communicate and shouted at him and pulled him about causing distress. I intervened on several occasions. We were left for long periods of time with no explanations.
I kept saying I need to be with my mum. She’s not been out of the house on her own in years, but no one would listen. I was upset as well.
There were also examples in the Urgent and emergency care survey of people being asked to make decisions they couldn’t consent to and a reliance on carers to explain things or communicate on their behalf.
Respondents to the Urgent and emergency care survey also spoke of poor communication between services in discharge arrangements, which may have been assessed as unsafe if the person’s dementia diagnosis was properly considered. This included people being discharged home to empty houses or without appropriate care packages in place, and not informing carers they were ready to come home.
The lady was listed for hospital admission, but because there were no beds was sent home by ambulance. She lives alone. The ambulance service did not put the heating on. The carers did not come for 12 hours post discharge and were unaware of changes to medication.
Poor communication between services and staff was also seen to have an impact on medicines management for people with dementia. Any changes to medicines need to be communicated between professionals, especially between services and in the community, as people with dementia may have difficulty remembering these changes or what medicines they have taken.
Families also raised concerns through Give feedback on care that adult social care staff did not always recognise that people with dementia may not always be aware that they require the attention of a doctor, or be able to communicate how they are feeling. This could mean that people were not receiving medical care or treatment in a timely and effective manner.
By the afternoon my mother's condition had deteriorated such that my sister, a trained nurse, assessed her condition as an emergency while she was visiting the care home. Eventually an ambulance was called by a GP who was on site. Senior staff and management at the care home failed to recognise a serious clinical situation that needed an emergency response. The ambulance very quickly diagnosed a probable hip fracture – within minutes.
What supports good communication with people?
Positive responses received in the Urgent and emergency care survey highlight the importance of good communication. They described experiences where communication was tailored to meet people’s needs and where their dementia was ‘seen’ and adjustments were made.
People described the way in which staff communicated with them as ‘patient’ and ‘kind’, and staff ‘respected’ people with dementia. One carer described how the hospital had contacted her and the occupational therapy team involved in the person’s care and shared all the information needed.
You seem to realise that a patient with dementia needs to be reassured. [Person’s name] was taken through A&E into a small back ward to be assessed and treated. Wow, well done everyone involved and thank you NHS for working hard to improve your services even when under such pressure. It made my time less stressful.
My experience [at hospital] was nothing but first class. The staff understood my panic. I did not have to explain my wife's dementia. My wife needs my full-time help. When we got into A&E the reception and staff were absolutely brilliant. My stress levels dropped. I was relieved. My wife was treated in less than 1 hour.
As reflected above, comments received through our Give feedback on care service describe the challenges people often face when contacting GP services and how these are heightened when having to advocate for someone with dementia.
However, we also received positive comments that illustrate the difference that good communication and treatment from GPs can make to people with dementia and their families and carers.
My husband has been recently diagnosed with Alzheimer's. I feel the GPs took my concerns seriously when we first approached them with vague symptoms. The receptionists are professional and discreet, but also friendly and approachable.
In our focus groups for this report, one inspector highlighted an example of good communication at a care home, which promoted social interaction and understanding between visiting families and carers and people with dementia.
Quote from an inspector during a focus group:
One provider used communication packs. When you walked in, there was a corner where there were bags with lots of different games and activities for relatives to engage with their family member. And there was a poem on the wall that said, ‘I may not be able to remember what’s been said, but I'll always remember how you made me feel’. When I spoke to the family members, they told me what a difference those packs had made and how they really helped to aid communication.
Some adult social care providers are exploring how they can use physical and digital tools to improve how they communicate with people with dementia. This includes technology to help assess pain for people who may not be able to verbalise it. This pain assessment technology has been seen to demonstrate a greater quality of life for people, as well as a decrease in the use of antipsychotic medication.
Adult social care provider information return:
Currently, new systems are in the process of using [the digital tool] which aims to assess residents who cannot reliably verbalise their pain. Facial expressions are more intense and more frequent with people living with dementia as they have lost 'learn behaviours.
Providers have also been using Talking mats, which is a digital screen with pictures to help people communicate when they find speaking difficult. Different packs of images can be purchased that relate to particular activities, so there is a cost associated with using this tool.
Adult social care provider information return:
Talking mats are completed and shared at the monthly residents’ forum and are also used in gaining feedback for surveys. This means we can gain the views of people living with dementia or communication needs where they have not had a voice before.
Environment
What is the impact of a poor environment?
People’s comments in the Urgent and emergency care survey expressed how a busy and noisy department could be very distressing for people with dementia. People described becoming very ‘agitated’ ‘anxious’ and ‘confused’, sometimes forgetting why they had come to urgent and emergency care (A&E). One respondent described how their mother returned home “very distressed, exhausted and [the experience] took a huge toll on her.”
People with dementia could not always understand why they had to wait so long, found it difficult to sit still or be comfortable and didn’t understand why they needed to see so many people. Carers told how this could be very difficult to manage, especially when help and information was difficult to obtain.
Respondents to the Adult inpatient survey indicated how people with dementia often need a stable, familiar environment with people they know around them to reduce stress and support their wellbeing. This can be challenging in a busy hospital environment.
Mum was moved ward and became very disorientated. She was very confused and frightened. She volunteered to be moved but I don't think her dementia was taken into account.
Analysis of hospital patient safety events notified to us shows that, for some people, anxiety and confusion can trigger aggression and this can result in staff using physical and chemical restraint.
People also used Give feedback on care to report that their family members were in care home environments that did not support their overall wellbeing. For example, people’s bedrooms did not contain objects they were familiar with, or there was a lack of access to outside space because rooms for people with dementia were on upstairs floors.
What supports a good environment for people?
Through the provider information returns, care homes told us how they are adjusting their environments to provide homely and calm spaces to support people with dementia. The most common adaptation was improved signage, which aimed to help people orientate themselves in the home. In line with Alzheimer's Society guidance on making homes more dementia friendly, signs used appropriate colours and pictures to symbolise rooms.
Other changes included adaptations such as falls sensors, indoor and outdoor dementia-friendly garden spaces, dining rooms to encourage people to eat together, and spaces that stimulate the senses, like sound and lighting to enhance the natural cycle of day and night (circadian rhythm lighting).
Adult social care provider information returns:
We are in the process of making our upstairs lounge into a sensory room and have obtained some equipment for residents with dementia that includes specific lighting, music and tactile objects. The sensory room is to benefit people with dementia by providing a stimulating but calming environment, promoting socialisation, and improving mood.
We maintained our indoor garden on the dementia residential area, which gives our residents the outdoor experience of being outside in the garden.
Homecare and care home services are using signs and assistive equipment to prevent harm, as well as prompt daily tasks, including eating and drinking.
Adult social care provider information returns:
We have requested a door and floor motion sensor and GPS tracker in case she wonders off while attending day provision.
With some clients with dementia, we have organised large, laminated notices to be pinned up to remind them of things. These include reminders for medication where we are not administering the medication; reminders for when carers will be visiting; our office contact number; contact numbers for family and friends; reminders to have food and fluids; and other pertinent information which they need to have but may forget.
We have in situ a talking clock that alarms when the lady needs reminding of a certain activity, for example time for lunch, take medication, going and getting up from bed. This is currently working well for her.
Extract from a CQC inspection report:
The service had recently signed up to a pilot to improve practices around supporting people with additional hydration needs. This involved a cup and saucer that could electronically measure how much had been drunk and upload this data onto their care records. Staff and other healthcare professionals could then accurately monitor how much a person was drinking throughout the day and offer more support if required.
Making positive adjustments to the environment was also highlighted by our Mental Health Act reviewers during their visits to hospital wards for older people and those with dementia. Reviewers described services using evidence-based design principles, such as those referenced by the Dementia Services Development Centre.
Extract from a report from a Mental Health Act monitoring visit:
The wards incorporated many recommended features for a dementia-friendly environment including the use of contrasting colours in bathrooms and for handrails, different coloured zones as orientation cues, natural light, low stimuli, attractive homely features and a lack of clutter.
Our 2014 thematic review, Cracks in the pathway, looked at the care of people with dementia receive as they moved between care homes and acute hospitals. Through this review, we saw how some urgent and emergency (A&E) departments had considered how confusing, noisy and disorientating the emergency department could be for patients with dementia. We have continued to see the measures that NHS hospitals are taking to improve the environment for people with dementia.
Extracts taken from a CQC inspection report of an NHS trust hospital:
The trust had placed significant emphasis on meeting the needs of people with dementia. In the outpatient department, quiet waiting areas for patients with dementia were provided. In the emergency department, patients were cared for in dementia-friendly cubicles, designed to create a calming environment. A ward was made dementia friendly and used activities, research and unique software to enhance the patient experience. This was prompted by a patient’s story at a board meeting.
During a focus group, one of our inspectors talked about an innovative example where a care home had developed a partnership with a charity film production company to put together a film of each resident’s life set to a soundtrack of their favourite music. The inspector described, while being “in the office a lady was outside, clearly distressed. She came into the office. They put on the film for her on a tablet computer, and within 30 seconds she’s a different person. She’d gone from distress, didn't know what was going on to, ‘Oh I remember doing this and I remember doing that’ and it was quite incredible to be honest.”
Keeping active
What is the impact of a poor approach to keeping active?
Keeping active and mentally stimulated is an important part of living well with dementia. Keeping active can also help reduce the risk of developing dementia.
People’s comments from analysis of the Adult inpatient survey indicate this could be difficult to achieve in a hospital setting. There was a lack of understanding from acute hospital staff around the specific needs of people with dementia, which affected the quality of their care and treatment.
Respondents recounted how they were left alone for long periods with little or no stimulation. One person said they were told mainly to stay in bed while another was given a colouring book and left to “get on with it”.
No stimulation was provided to the patients – they were just left on their own for most of the day which would have been very confusing for patients with dementia in particular.
Keeping people appropriately active and stimulated while in hospital is important to help prevent their physical and mental health from declining and avoid delayed discharge. This is particularly important considering that Alzheimer’s Society’s report on health metrics calculates that people with dementia stay over twice as long for acute inpatient care compared to patients with similar characteristics that don’t have dementia, particularly for unplanned admissions.
Feedback from adult social care providers through their information returns told us that person-centred activities were provided within dementia-friendly environments. However, this was not reflected in many of the comments received through Give feedback on care. Several people told us that their loved ones were confined to their rooms with little or no contact with other people.
Dad was left to his own devices in his room alone. The staff either sat in the TV room on their phones, or in the dining room out the way. In 2.5 months I never saw any classes or therapy to help residents.
Staff are never available to take mum outside for fresh air and she is confined to her room.
Failure to properly engage and interact with people with dementia can lead to their overall health and wellbeing deteriorating, and also be the trigger for distressed behaviours that require additional staffing support.
What supports a good approach to keeping active?
Understanding each person means that services can tailor activities to meet the needs of people with dementia.
In their provider information returns, adult social care services gave examples of different activities for people, including specific activities for those with dementia. This included outdoor activities such as gardening. A small number of services described creating dementia-specific opportunities for people to get out into new environments and socialise.
Other activities that providers said they supported people to attend included:
- dementia-friendly film and theatre screenings
- Alzheimer’s Society events, like tea parties and community lunches
- men’s shed and allotment visits for people with dementia
- connecting with local primary school or local school productions
- trips to dementia-friendly coffee mornings
- producing a newsletter with activities that people with dementia are encouraged to complete
- visiting the local library
- choir for people with dementia
- dementia-friendly swimming lessons.
Care services gave some positive examples of activities that engaged the local community into the life of the care home, which is important for inclusion.
Adult social care provider information returns:
We have built strong links within the community to ensure that our residents are engaged with community groups. The men’s shed now host a monthly session where men with dementia can enjoy socialising and activities. We are also now a donation point for the local foodbank. Work is underway for two of our team to be trained to host ‘singing for memory’, which means we will be able to invite both our residents and residents from the community to participate in this. We have also worked on intergenerational lifestyles and have a playgroup who visit the residents once per week.
Friendship Café is held monthly. Mainly aimed at carers, to give them some relief, they can bring the person they care for if they wish. A chance for coffee, cake, a chat with others in similar situations to themselves.
As described above, in care home environments often the most effective activities are person-centred and tailored to the individual, supported by life story work to understand people’s histories. This could be as simple as helping with laundry or working with the handyman.
A few providers were able to demonstrate the positive impacts of these person-centred approaches – for example “a reduction in the use of antipsychotic medication, improved appetite, increased activity levels, and decreased number of infections and falls.”