Understanding care homes

Researchers wanting to work with care homes, or planning a study involving care home residents, need to recognise the differences between patients and residents, and the particular challenges of conducting research outside NHS healthcare settings.

THE CARE HOME SECTOR: HOME NOT HOSPITAL

In the UK, the majority of long-term care for older people is provided by staff working in care homes. The overarching ethos in care homes is that they are places where people with complex health needs live; it is their home, and quality of life matters. Approximately 416,000 people live in care homes (Laing and Buisson survey 2016). This is 4% of the population aged 65 years and over, rising to 16% of those aged 85 or more.

There are different levels of care accommodation available depending on the level of care required. Care homes are a catch-all term used for Nursing homes (care homes with nursing care) and Residential homes (care homes without nursing care). Care homes with nursing care provide help and assistance with personal care, which is also provided by those without nursing care (residential care homes), but they also have professional registered nurses and experienced care assistants who provide 24-hour nursing care services for people with more complex health needs. In addition to being registered to provide general nursing care, many homes also offer rehabilitation services which include different therapies, such as physical, speech and pain therapies and specialist health care including, dementia care, EMI nursing care and palliative care. These homes are for people who are very frail or for people who are unable to care for themselves and have complex health care requirements.

There are also a number of other care plus, and retirement communities where other types of care are provided.

“We found that approaching organisations at the same time as individual care homes has worked very well and saved time as well as increasing recruitment. They have also helped support the study and access to care homes.”

Claire Surr, Professor of Dementia Studies, March 2015

CARE HOME RESIDENTS: HIGH LEVELS OF NEED

There is considerable overlap in health status and need for care and support amongst residents in all care homes, and in particular a high prevalence of cognitive impairment (conditions such as dementia), co-morbidity (people who have more than one illness) and polypharmacy (people who take several prescribed drugs).

Most care home residents are women and are over 85 years old, with an average life expectancy of less than two and a half years. This means that end-of-life care is a core component of care home activities, and this can have an impact on research studies, regardless of the research question.

While residents differ, many have complex health care needs including diseases, disabilities and conditions that affect older people and which reduce life expectancy. Some challenges are unique to the sector. To provide some context, here we present further information on four of the most common conditions residents of care homes may have/live with, which require careful consideration in a study:

Musculoskeletal problems

Musculoskeletal disorders are among the most common problems affecting the elderly. The resulting loss of mobility and physical independence can be particularly devastating in this population. Rheumatoid arthritis alone affects over 85,000 people over the age of 75 (Arthritis Research UK 2015), many of the people affected live in care homes.

Dementia

In England, approximately 283,000 people with dementia live in care homes (Alzheimer’s Society, 2015). Over 42% of care homes are registered as providers of specialist dementia care. The Alzheimer’s Society also reports that around 80% of care home residents have dementia or severe memory problems, however, this varies by the type of home. Care homes are quickly adapting to the needs of increasing numbers and proportions of residents with dementia, and homes that specialise in the care of people with dementia are becoming more common.

Stroke

There are approximately 1.2 million stroke survivors living in the UK, over a third of stroke survivors in the UK are dependent on others but only 1 in 5 are cared for by family and / or friends (Stroke Association 2015). Many stroke survivors need a long period of rehabilitation, and approximately 11% of stroke patients move to a care home after their stroke (NAO 2010). By the age of 75, 1 in 5 women and 1 in 6 men will have a stroke (Stoke Association 2015). Stroke is reported to be the second most common cause of disability after dementia in a UK nursing home population (Martin 1998).  

Parkinson’s Disease

It is estimated that around 1 in 500 people are affected by Parkinson’s Disease and there are currently 127,000 people in the UK with the condition. Around 5% of people living in care homes have Parkinson’s Disease (Parkinson’s UK, 2015). As with other conditions those residents with Parkinson’s Disease have very specific care needs, which may be met by specialist care homes or other more general care homes. These include swallowing problems, risk of falls, bladder and bowel problems and sleep difficulties. These are often the subject of research.

Palliative / end-of-life care

Approximately 60% of all deaths that occur each year in the UK are expected and predictable. The main causes are cancers, end stage organ failure, neurodegenerative diseases and dementia. Around 97,000 people (17.8% of all those who die in England each year) die in a care home (2008-2010 data from Office for National Statistics (ONS) for England and Wales). Approximately 3,000 care homes in England are registered as specialising in end-of-life and palliative care (CQC 2015), and at the time of producing this website 462 had received the Gold Standards Framework accreditation award for quality of care provided to people at the end-of-life.

MATTERS TO CONSIDER

  • Care homes can vary in size from less than 10 places to over 100, however the trend is for care homes that have a higher number of beds due to the economies of scale.
  • Care homes may have changes in ownership or management while a study takes place (some managers may be temporary).
  • Staffing levels and skill mix vary between types of care home (residential and nursing) and between individual care homes.
  • Many staff working in care homes are female workers who work part-time or flexibly; they are often paid very close to the National Minimum Wage. Staff turnover can affect the stability of the working environment. Staff turnover may be highest amongst more junior care assistants who provide the majority of the day to day care.
  • Care homes can work with between one and 20 separate GP practices.
  • Access to community health services and specialist services is variable across the country and is subject to local interpretation by commissioners and NHS practitioners. It is important to distinguish between care homes that offer personal care and support only and those that offer nursing care. In a care home that is registered to provide both nursing and personal care, a resident’s status can change to requiring nursing care. This does not necessarily mean they will move to a different care home, but there is a possibility that they need to move rooms, or to parts of the building with different access to common areas and a change of care home worker.
  • The dependency or disability of residents,  the proportion that have been admitted from hospital, and funding or payment mechanisms (i.e. self-funding, wholly public funding, NHS continuing care, intermediate/respite/re-ablement care, public funding with top-up from resident or family) can impact upon staffing levels, investment in staff training, and the relationship with local NHS and Local Authority services.
  • The regulator (In England: the Care Quality Commission – CQC / Care Inspectorate (CI) in Scotland and Care and Social Services Inspectorate in Wales (CSSIW)) is responsible for assessing the quality of care against National Minimum Standards. These standards influence how records and notes are organised, kept and maintained in care homes as well as a range of other organisational factors.

Additional Statistics

  • The care home resident population for those aged 65 and over has remained almost stable since 2001 with an increase of 0.3%, despite growth of 11.0% in the overall population at this age (Changes in the Older Resident Care Home Population between 2001 and 2011. Office for National Statistics, 2014).
  • Only 16% of people aged 85+ in the UK live in care homes. (Care of Elderly People Market Survey 2013/14, Laing and Buisson, 2014)
  • The median period from admission to the care home to death is 462 days or 15 months. (Length of stay in care homes. Julien Forder and Jose-Luis Fernandez, PSSRU Discussion Paper 2769, 2011)
  • Around 27% of people lived in care homes for more than three years. (Length of stay in care homes. Julien Forder and Jose-Luis Fernandez, PSSRU Discussion Paper 2769, 2011)
  • Some studies estimate that depression affects 40% of older people in care homes. (Depression and Older People: Towards securing well-being in later life, Help the Aged, 2004).

“We have much appreciated the support and advice that ENRICH has provided for our study PAAD. Providing potential members for our Trial Steering Committee through the Research Ready Care Home Network and advice on practical issues such as care home indemnity through the toolkit. This support has been very valuable to us.” Victoria goes on to say “Conducting research in this care setting feels like treading a lonely path and its reassuring to know that there are others out there!”

Victoria Shepherd, Research Lead for PAAD, South East Wales Trial Unit at Cardiff University, August 2013

Information for Funders

Research funders reviewing proposals are advised to look for evidence that the applicant understands the environment in which they intend to work. This understanding may be evident in the proposed recruitment timetable, work schedules and costs of research assistants (allowing for out-of-normal-hours working) and plans for flexibility in on-site working. Funders should be aware that homes may have to withdraw from a study for a variety of reasons and arrangement for loss of participating homes should be outlined in the research application. Funders should also be aware that some staff will be low paid and that the offer of some form of compensation to the care home may be well received.

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