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  1. Content Article
    Where possible, both the person with dementia and their carer should be closely involved in decisions about the person’s treatment and should be shown their care plan. Alzheimer's Society suggests that the following questions may help with discussions: Why is the person being prescribed an antipsychotic? Which symptoms is the drug meant to be helping with? Have possible medical causes of their symptoms (such as infection, pain or constipation) been ruled out? Can non-drug approaches be tried first? What can I do as a carer to help? Do you need to know more about the person as an individual to work out what may be causing their symptoms? How will we know if the drug is working? What side effects might the drug cause? What is the plan for the person to come off the antipsychotic? When will the use of this drug be reviewed? Follow the link below to find out more.
  2. Content Article
    The pandemic has had a devastating impact on those living in care settings, particularly on people with dementia. During the initial wave of the pandemic (between March and June 2020) over a quarter of people who died from COVID-19 in England and Wales had dementia, making it the most common pre-existing condition associated with COVID deaths.[1] In addition to this, the imposition of restrictions to slow the spread of virus has had a particularly detrimental impact on the mental health, cognitive abilities, and physical wellbeing of people with dementia.[1] Recently there has been emerging evidence and reports indicating that, during the pandemic, there has been an increase in the number of prescriptions of antipsychotic medications for people with dementia.[2] This has raised the possibility that a patient safety concern that pre-dates COVID-19, namely the inappropriate prescription of antipsychotic medications to people with dementia, may have been exacerbated by the pandemic. Why are antipsychotic medications prescribed for people with dementia? Antipsychotic medications are commonly prescribed for people living with dementia in response to the behavioural and psychological symptoms of the condition.[3] Symptoms can vary and can include psychotic symptoms, such as hallucinations and delusions, as well as behavioural symptoms, such as aggression, restlessness, depression, and anxiety. If these symptoms appear to be causing the person significant distress, or if there is a risk of the person harming themselves or others, antipsychotic medications may be prescribed by their doctor to reduce the intensity of their symptoms.[4] Antipsychotic medications are accompanied by serious side effects for people with dementia, particularly if they are used for a period of several weeks. Side effects can include drowsiness, shaking and unsteadiness, and increased risks of infection, falls, blood clots and strokes.[3] Government acknowledgement of risks around the prescription of antipsychotic medications Given the significant health impacts of these side effects, the widespread use of antipsychotic medications in care settings for people with dementia is a contentious issue. Alzheimer’s Society have raised concerns about the potentially inappropriate prescription of these medications given their harmful side effects.[5] They have made the case that, in many instances, these medications may only have a moderate benefit and fail to tackling the underlying causes of patients’ behavioural and psychological symptoms.[5] The validity of these concerns has been accepted at a government level in the UK. A 2009 study by the Department of Health investigated this issue in depth and set out several recommendations aimed at reducing the use of antipsychotic medications for people with dementia.[6] The study estimated that, out of 180,000 people with dementia treated with antipsychotic medication annually, around 140,000 prescriptions were inappropriate.[6] Subsequently, through various dementia action plans and strategies, the UK Government and devolved administrations have set out plans to reduce this use of antipsychotic medications.[7] [8] [9] However, although identified as a safety risk for the past decade, it has proved difficult, in practice, to reduce the inappropriate use of antipsychotics in care settings. Despite policy commitments aimed at addressing this issue, there has been a lack of progress.[10] [11] This was the case before the COVID-19 pandemic. Now, the situation is potentially becoming worse. Increased use of antipsychotic medications during the pandemic Emerging evidence suggests that this patient safety issue may have been exacerbated by the pandemic, with new data indicating a notable increase in the prescription of antipsychotic medications for people with dementia in the UK and Canada.[2] [12] Campaigning groups and the media have drawn attention to this issue, highlighting the risks posed by a potential increase in inappropriate prescriptions of these medications.[13] [14] [15] [16] Alzheimer’s Society has called for the Government as part of its roadmap to ease lockdown to formally investigate why the use of antipsychotic medications for people with dementia has risen during this period. A range of causes are suggested as being responsible for this increase: Prescriptions being made in response to a worsening of symptoms, such as agitation and aggression. This deterioration is being linked to restricted contact with friends and family as a result of pandemic restrictions.[1] Significant pressures on staff and insufficient levels of staffing, resulting in antipsychotic medications becoming the primary option for a person experiencing distressing symptoms, rather than first trying non-drug strategies for behavioural and psychological symptoms of dementia. Reduced ability of carers and family members to be effectively involved in making decisions over the use of these medications due to significantly reduced contact during the pandemic. Key patient safety issues There is a need for further work to be undertaken to establish whether this increase in prescriptions of antipsychotic medications also represents an increase in cases where this is being done so inappropriately. However, given our awareness of the pre-existing problem with inappropriate prescriptions, we believe there are potentially three key patient safety concerns arising from this issue. 1. Health impact One concern about the increased use of antipsychotic medications in care settings is an increased risk of serious side effects. As noted earlier, there are a range of health risks associated with taking antipsychotic medications, particularly for older people with dementia, who face an increased risk of pneumonia and stroke.[17] [18] This is even more concerning for people with Lewy body dementia (dementia with Lewy bodies or Parkinson’s disease dementia) who are at risk of particularly severe reactions to antipsychotic medications and a significantly increased mortality risk.[19] 2. Informed consent and shared decision-making On informed consent, the NHS states “the person must be given all of the information about what the treatment involves, including the benefits and risks, whether there are reasonable alternative treatments, and what will happen if treatment does not go ahead”.[20] We believe it is important that people are not treated as passive participants in their care; it is vital that health and care staff respect the rights of patients and enable them to make fully informed decisions about the treatment they receive. In many cases where a person with dementia is prescribed antipsychotic medications they may lack capacity to make decisions about their care, with this responsibility falling to a person with power of attorney for decisions regarding their health and welfare. This person, who may be a family member or friend, needs to be able to make decisions on their behalf in an informed way. In normal circumstances this can be challenging. The person with power of attorney may not be aware of the right questions to ask about antipsychotic medications, their side effects, or when this treatment will be reviewed, reduced, and stopped. The concern now is that this may become even more difficult because of the pandemic, with reduced contact between a patient’s family and friends and the patient, as well as between a patient’s family and friends and those responsible for the patient’s care. They will also have significantly fewer opportunities to assess the impact of the symptoms that these antipsychotic medications are being prescribed for and to use this to inform their decision-making process. 3. Safe staffing levels Concerns about staffing levels are nothing new in social care, which was already overstretched prior to the pandemic; there are currently an estimated 112,000 vacancies in care staff in England alone.[21] Near the beginning of the pandemic, Patient Safety Learning identified this as a potential patient safety concern, noting how the increased pressure of the pandemic, coupled with a lack of care staff, may impact the quality of care.[22] Working in these high-pressure conditions, it is possible that non-drug strategies for treating behavioural and psychological symptoms of dementia are not being fully pursued. Instead, the use of antipsychotic medications may become a first choice to calm a person experiencing distressing symptoms, rather than initially employing potentially more time-consuming and resource intensive non-drug strategies. Patient safety investigation and action needed Patient Safety Learning believes that there is a need for patient safety investigation and action by the Department of Health and Social Care and the Care Quality Commission in several areas: Investigating patient safety concerns of antipsychotic medication We support calls for the Department of Health and Social Care and the Care Quality Commission to investigate the increased prescription of antipsychotic medications for people living with dementia during the pandemic. Informed consent and shared decision-making As part of its investigation, the Department should review the information provided to people with dementia and their carers on what involvement they should expect in decisions about antipsychotic medications, considering whether this is sufficient. The Department should work with charities, such as Age UK, Alzheimer’s Society, Dementia UK, and the Lewy Body Society to ensure the widest possible dissemination of patient guidance on this issue. Staff training We believe that the Department should work with organisations such as Skills for Care and the Social Care Institute for Excellence to assess what additional training may be required for staff in this area. The Department should work with these bodies to share good practice for those working in social care on the use non-drug strategies for treating the behavioural and psychological symptoms on dementia.[23] [24] Guidance and advice for care providers The Department should consider and report on the opportunities and financial incentives for non-drug strategies for treatment, providing case studies of good practice. The Department should consider and report on whether there are any financial disincentives or barriers that may be preventing the use of non-drug strategies for treatment, such as potentially increased costs of person-centred care and personalised solutions. We would like to hear your views We are keen to explore this issue further and would like to learn more from people’s experiences concerning the prescription of antipsychotic medications for people living with dementia. Are you a carer or a family member of a person living in a care setting with experience of this issue? Do you work in a care home, nursing home or in domiciliary care and have a view on this issue? If you have insights you would like to share, please email the Patient Safety Learning team or share your thoughts on the hub. References 1. Alzheimer’s Society, Worst hit: dementia during coronavirus, September 2020. 2. Robert Howard, Alistair Burns and Lon Schneider, Antipsychotic prescribing to people with dementia during COVID-19, Lancet Neurol, November 2020. 3. Alzheimer’s Society, Antipsychotic drugs, Last Accessed 13 February 2021. 4. Social Care Institute for Excellence, Antipsychotic medication and dementia, Last Accessed 13 February 2021. 5. Alzheimer’s Society, Alzheimer’s Society’s view on antipsychotic drugs, Last Accessed 13 February. 6. Department of Health, The use of antipsychotic medication for people with dementia: Time for action, 2009. 7. Medicines and Healthcare products Regulatory Agency, Antipsychotics: initiative to reduce prescribing to older people with dementia, 11 December 2014. 8. Welsh Government, Dementia Action Plan for Wales, 2018-2022, 2018. 9. Scottish Government, Scotland’s National Dementia Strategy 2017-2020, 2017. 10. Ala Szczepura et al, Antipsychotic prescribing in care homes before and after launch of a national dementia strategy: an observational study in English institutions over a 4-year period, BMJ Open Vol. 6. Issue 9, 2016. 11. Welsh Government, Measuring the prevalence of antipsychotic use in care homes in Wales: Report of the Short Life Working Group, 2019. 12. Nathan M. Stall et al, Increased Prescribing of Psychotropic Medications to Ontario Nursing Home Residents during the COVID-19 Pandemic, medRxiv, 2020. 13. Jane Buchanan and Kim Samuel, Another COVID risk – overuse of psychotropic drugs on seniors in care, Human Rights Watch, 15 January 2021. 14. ITV News, ‘It’s a chemical cosh’: How Covid increased the use of antipsychotics among people with dementia, 21 January 2021. 15. Daily Mail, Dementia patients ‘are being given “archaic and dangerous” anti-psychotic drugs to keep them sedated during lockdown putting them at risk of early death’, as grandmother, 86, dies six weeks after starting medication, 26 October 2020. 16. Vancouver Sun, COVID-19: More care home residents given ‘potentially inappropriate’ mood-calming drugs in 2020, data suggests, 13 February 2021. 17. Wilma Knol et al, Antipsychotic drug use and risk of pneumonia in elderly people, Journal of American Geriatrics Society, 2008. 18. Sanja Zivkovic et al, Antipsychotic drug use and risk of stroke and myocardial infection: a systematic review and meta-analysis, BMC Psychiatry, 2019. 19. The Lewy Body Society, Treatment, Last Accessed 17 February 2021. 20. NHS England and NHS Improvement, Consent to treatment, Last Accessed 22 February 2021. 21. Skills for Care, The state of the adult social care sector and workforce in England, October 2020. 22. Patient Safety Learning, Covid-19 and social care; we must act now to ensure patient safety, Patient Safety Learning’s the hub, 14 April 2020 23. Alzheimer’s Society, Organising treatment and care for people with behavioural and psychological symptoms of dementia: A best practice guide for health and social care professionals, 2011. 24. Social Care Institute for Excellence, Alternatives to antipsychotic medication, Last Accessed 18 February 2021.
  3. News Article
    The government is facing criticism over its guidance on safe visits to care homes in England. Labour and a number of charities have described the suggestions, including floor-to-ceiling screens, designated visitor pods and window visits, as impractical. Alzheimer's Society has said it "completely misses the point". Justice Secretary Robert Buckland told BBC Radio 4's Today programme the guidance was "non-exhaustive". The updated government advice, which came into effect on Thursday, says care homes - especially those which have not allowed visits since March - "will be encouraged and supported to provide safe visiting opportunities". Labour's shadow care minister Liz Kendall said many care homes would not be able to comply with the government's requirements which meant "in reality thousands of families are likely to be banned from visiting their loved ones". She said instead of suggesting measures such as screens, the government should "designate a single family member as a key worker - making them a priority for weekly testing and proper PPE". Kate Lee, chief executive at Alzheimer's Society, said: "We're devastated by today's new care home visitor guidance - it completely misses the point: this attempt to protect people will kill them." She said the pandemic had left people with dementia isolated and thousands had died. The guidelines "completely ignore the vital role of family carers in providing the care for their loved ones with dementia that no one else can", she added. She said the "prison-style screens" proposed by the government with people speaking through phones were "frankly ridiculous when you consider someone with advanced dementia can often be bed-bound and struggling to speak". That view was echoed by Caroline Abrahams, charity director at Age UK, who said she was "acutely aware" that the methods being sanctioned were "unlikely to be useable by many older people with dementia, or indeed sensory loss". Read full story Source: BBC News, 5 November 2020
  4. News Article
    An NHS trust has offered an unreserved apology to an elderly patient and his family after they accused hospital staff of restraining him 19 times in order to forcibly administer treatment. East Kent Hospitals University NHS Foundation Trust admitted that care for the man, who has dementia, “fell far short” of what patients should expect. The 77-year-old had been admitted to the William Harvey Hospital last November for urinary retention problems, according to a recent BBC investigation. In February, The Independent revealed that a police investigation had been launched into an alleged assault against an elderly man at the hospital after nurses and carers were filmed by hospital security staff holding the man’s arms, legs and face down while they inserted a catheter. A whistleblower told The Independent that the incident was being covered up by the trust and staff were told: “Don’t discuss it, don’t refer to it at all.” On Wednesday, the trust said its investigation had found a failure to alert senior medics to the difficulties being experienced in caring for the patient. Changes to dementia care including ward reorganisation, training and recruitment are underway, said a spokesperson, who added: “We apologise unreservedly to the patient and his family for the failings in his care, this fell far short of what patients should expect.” Read full story Source: The Independent, 14 October 2020
  5. News Article
    Tens of thousands of people avoided going to hospital for life-threatening illnesses such as heart attacks during Britain's coronavirus crisis, data has revealed. Shocking figures reveal that admissions for seven deadly non-coronavirus conditions between March and June fell by more than 173,000 on the previous year. Previous data for England shows there were nearly 6,000 fewer admissions for heart attacks in March and April compared with last year, and almost 137,000 fewer cancer admissions from March to June. Analysis by the Daily Mail found that the trends were alarmingly similar across the board for patients who suffered strokes, diabetes, dementia, mental health conditions and eating disorders. Health experts said the statistics were 'troubling' and warned that many patients may have died or suffered longterm harm as a result. Gbemi Babalola, senior analyst at the King's Fund think-tank said: "People with some of the most serious health concerns are going without the healthcare they desperately need. Compared with the height of the pandemic, the NHS is seeing an increase in the number of patients as services restart, and significant effort is going into new ways to treat and support patients." "But the fact remains that fewer people are being treated by NHS services." Read full story Source: Daily Mail, 13 September 2020
  6. News Article
    A dementia charity is seeking a judicial review of the government guidance on care home visits. John's Campaign says many care homes in England are still refusing regular face-to-face visits, often essential for people with severe dementia. Dr Angela McIntyre, a retired doctor backing the campaign, has not seen her 92-year-old mother since March. A Department of Health spokesman said: "We know limiting visits in care homes has been difficult for many families." He added: "Our first priority is to prevent infections in care homes, and this means that visiting policy should still be restricted with alternatives sought wherever possible. "Visiting policies should be tailored by the individual care home and take into account local risks in their area." But John's Campaign believes the guidance does not take into account how important visits from family members are for dementia patients and believes it could be in breach of the law. Read full story Source: BBC Health, 3 September 2020
  7. News Article
    Relatives of care home residents with dementia should be treated as key workers, leading charities say. In a letter to the health secretary, they write that the care given by family members is "essential" to residents' mental and physical health. They argue the current limits on visitors have had "damaging consequences" and they want visits to resume safely, with relatives given the same access to care homes and coronavirus testing as staff. Signed by the bosses of leading charities including Dementia UK and the Alzheimer's Society, the letter calls on the government to "urgently" address what it calls the "hidden catastrophe" happening in care homes. The charities say that this "enforced separation" has caused a "deterioration" in residents' mental and physical health, particularly for those living with dementia - who make up more than 70% of the population of care homes. Read full story Source: BBC News, 9 July 2020
  8. News Article
    There were almost 10,000 unexplained extra deaths among people with dementia in England and Wales in April, according to official figures that have prompted alarm about the severe impact of social isolation on people with the condition. The data, from the Office for National Statistics, reveals that, beyond deaths directly linked to COVID-19, there were 83% more deaths from dementia than usual in April, with charities warning that a reduction in essential medical care and family visits were taking a devastating toll. “It’s horrendous that people with dementia have been dying in their thousands,” said Kate Lee, chief executive officer at Alzheimer’s Society. “We’ve already seen the devastating effect of coronavirus on people with dementia who catch it, but our [research] reveals that the threat of the virus extends far beyond that.” The charity thinks the increased numbers of deaths from dementia are resulting partly from increased cognitive impairment caused by isolation, the reduction in essential care as family carers cannot visit, and the onset of depression as people with dementia do not understand why loved ones are no longer visiting, causing them to lose skills and independence, such as the ability to speak or even stopping eating and drinking. Another factor may be interruptions to usual health services, with more than three-quarters of care homes reporting that GPs have been reluctant to visit residents. Read full story Source: The Guardian, 5 June 2020
  9. News Article
    Once COVID-19 seeps into care homes, it is a monumentally difficult job to protect the residents, writes Sky's Alex Crawford. We will look back at this appalling, tragic episode in our global history, and our children and grandchildren will ask us: "Did that really happen? Did you really leave the most vulnerable of our society - the elderly, the infirm, the defenceless, the muddled, sick and weak - in care homes, shut away from their closest relatives? Did you leave them to be ravaged by a deadly virus, and do very little to help them?" Because that is what's happening right now. There are elderly people - many with Alzheimer's, many with dementia, many frail - in thousands of residential homes up and down Britain, and they are very much at risk. Read full story Source: Sky News, 11 Aril 2020
  10. Content Article
    Recommendations The NHS and local authorities must set out how they will involve social care providers and care homes in winter pressure planning to ensure that social care is placed on an equal footing with the NHS, and that their situation is understood, accounted for and supported. This must include the provision of regular and timely testing and PPE. National UK governments must guarantee that where care was stopped due to coronavirus precautions (particularly domiciliary care), it will be reinstated when deemed safe, without the need for unnecessary further formal assessment. The UK Government must ensure that the Infection Control Fund remains in place until at least April 2021 and care providers should be able to use that fund flexibly, including for infection control, technology and supporting visits. National UK governments should commit to ensuring that any communications to, or requirements of, people affected by dementia (both in the community and in care homes) are clear, consistent and straightforward to understand. Any guidelines should reflect the daily lived experience and particular needs of people affected by dementia. Recognising the key role that informal carers play in the lives of people living with dementia, national UK governments must take action to support people in this role by: a. Allowing for at least one informal carer per care home resident to be designated a key worker, with access to training, COVID-19 testing/ vaccinations and PPE. b. Ensuring the delivery of carers’ assessments and provision of short breaks for carers. c. Collecting local authority and health authority data on carer assessments and respite care. Where care homes are unable to facilitate visits from loved ones, they must be required to notify national care inspectorates (CQC/CSSIW/RQIA) and seek to put in place suitable alternative arrangements to maintain appropriate contact between loved ones and care home residents who have dementia. National UK governments needs to set out a clear strategy to enable people affected by dementia to recover from the effects of the pandemic, including rehabilitation to counteract effects on cognitive or physical functioning, support for mental and physical health, and speech and language therapy. National UK health and social care departments must develop and implement a clear recovery plan to ensure that all elements of memory assessment services can re-open and urgently catch up on waiting lists so the freefall in dementia diagnosis rates does not continue.
  11. News Article
    A police investigation has been launched into an alleged assault against an elderly patient with Alzheimer’s by NHS staff at the troubled East Kent Hospitals University NHS Foundation Trust. The Independent can reveal nurses and carers at the William Harvey Hospital have been suspended after being filmed by hospital security staff for eight minutes allegedly holding down the man’s arms and legs as well as his face while they inserted a catheter. The trust has confirmed it has launched an investigation and alerted police after the incident on 15 December on the Cambridge J ward at the William Harvey Hospital in Ashford. A spokesperson “apologised unreservedly” for the incident and said it was being treated with the “utmost seriousness”. A whistleblower spoke out to The Independent about the incident, fearing it was being covered up by the trust after staff were told “don’t discuss it, don’t refer to it at all”. The senior clinician said they had decided to go public after the “horrific” incident because of the trust’s toxic culture and concerns for the welfare of other patients on wards. Read full story Source: The Independent, 7 February 2020
  12. News Article
    Dementia patients are being dumped in hospitals in England because of a lack of community care, a charity says. The Alzheimer's Society called for action, highlighting data showing one in 10 dementia patients spends over a month in hospital after being admitted. The figures also suggested the overall number of emergency admissions among people with dementia is rising - with some patients yo-yoing back and forth. Ministers said they were "determined" to tackle the problems. Central to this, the government said, would be plans for reforming the social care system, which encompasses care home places and support in people's homes. Alzheimer's Society Chief Executive Jeremy Hughes said people were falling through the "cracks of our broken social care system". "People with dementia are all too often being dumped in hospital and left there. Many are only admitted because there's no social care support to keep them safe at home. They are commonly spending more than twice as long in hospital as needed, confused and scared." Read full story Source: BBC News, 22 January 2020
  13. News Article
    The daughter of a man with dementia who died after being pushed by another patient in a care facility, has said her family has been let down by authorities. John O'Reilly died a week after sustaining a head injury at a dementia care unit in County Armagh. The 83-year-old was pushed twice by the same patient in the days leading up to the fatal incident. His family were not made aware of this until after his death. On 4 December 2018, Mr O'Reilly was pushed by another dementia patient causing him to hit his head off a wall. His family have said he was pushed with such force that it left a dent in the wall. He was admitted to Craigavon Area Hospital with severe head injuries and died a week later. Last week, an inquest heard that the dementia patient who pushed Mr O'Reilly had a history of aggressive behaviour linked to dementia. The Southern Trust is carrying out as Serious Adverse Incident (SAI) investigation into Mr O'Reilly's death. Maureen McGleenon said: "Our experience of the SAI process has been dreadful. In our view it allows the trust to park the fact that something catastrophic has happened to a family. We were told it would be a 12-week process. It's over a year now and we've expended so much energy trying to figure out this process and find things out for ourselves." She added: "The system just knocks you down and makes you want to give up." "We'll never get over what happened to dad and we can't give up on trying to understand it." Read full story Source: BBC News, 20 January 2020
  14. Content Article
    What is known • The prevalence of dementia experiences and the cost of dementia care will continue to dramatically escalate in the next 20 years. • At a strategic level, commissioning frameworks in the UK are prioritising effective integrated, multidisciplinary working. • We know very little about the challenges encountered by practitioners at the ground level. What this paper adds • Unique interpretative analysis of the views and perspectives of a range of dementia service practitioners. • Insights into how current commissioning frameworks risk accentuating inter‐practitioner prejudices, communication breakdown and practice overlap. • Suggestions of how commissioning frameworks could proactively diffuse inter‐agency prejudices. For example, through encouraging statutory and third‐sector service providers to form consortia bids and to build relationships through shadowing and shared office space.
  15. Content Article
    Evidence suggests that care, treatment and outcomes of hospital admission are markedly poorer for people with dementia than for those without. Several potential factors may contribute to this, including: pressures of acute care the unique and complex needs of the person with dementia not being recognised organisational systems and processes – acute general hospitals are fast-paced and intense, with a focus on rapid responses, meeting acute needs and achieving discharge as soon as possible. These can lead to a number of risks for people with dementia, including: prolonged stay in hospital increased complications, such as pressure ulcers, falls and delirium increased adverse drug reactions loss of previous abilities and increased levels of dependence incidents of incontinence that can become permanent decline in cognitive function an increased likelihood of admission to a care home increased morbidity and mortality.
  16. Content Article
    This was an explorative study, with qualitative in-depth interviews of 23 family carers of older people with suspected or diagnosed dementia. Family carers participated after receiving information primarily through health professionals working in dementia care. A semi-structured topic guide was used in a flexible way to capture participants’ experiences. A four-step inductive analysis of the transcripts was informed by hermeneutic-phenomenological analysis.
  17. Content Article
    Contents of this booklet: Why does it happen? Ways to support the person Think about unmet needs Understanding the person's health needs Changing daily life