A guide for families and carers. Frailty is a long term condition which affects some older people by increasing their need for more support at home

If you are finding that your ageing parent is needing more support with day to day tasks, or you are all lurching from crisis to crisis then it's worth considering whether frailty might be playing a part.

Frailty is currently poorly understood but evidence shows that it is a specific long term condition which affects some older people but it not an inevitable condition of ageing.

In the UK, it is estimated that frailty affects around one quarter of people over 85 years and 12% of those over 65 years.  It is more common in women than men and often - but not always – co-exists with other long term conditions and disabilities. 

Those affected by frailty become unusually vulnerable to a sudden and significant deterioration in their physical or mental wellbeing in the face of relatively minor triggers such as an infection, fall, or change in circumstances. 

People living with frailty are more likely to need health or social care and more likely to experience poor outcomes from that care.  They are more likely to suffer a fall , disability or impairment and to need long term care. 

Our medical and scientific understanding of frailty has been developing at pace over the last decade but it is still incomplete.  There are key gaps in our knowledge about its cause and treatment.  If the majority of older people do not develop frailty then how does it develop? How can it be prevented? And how can it be treated? 

Current knowledge suggests that frailty develops as a consequence of age-related decline affecting multiple systems in the body including hormones, the mind, the immune system, bones and muscle, etc. 

Identifying those affected by frailty

It is helpful to identify people with frailty in order to plan for their care needs and arrange appropriate safeguards.

A comprehensive assessment is needed to make a definitive diagnosis of frailty.  People who might be at an increased risk and could benefit from an assessment include those who are: 

Another important group are those over 65 who experience problems which are often associated with frailty i.e.

  • Falls - legs gave way, found lying on the floor, collapse
  • Fluctuating disability – good days and bad days with evidence of a sudden change in mobility such as getting stuck in the toilet or being unable to stand up properly
  • Delirium – becoming suddenly muddled or worsening confusion in someone with dementia
  • Incontinence  - new or worsening urine or faecal incontinence
  • Susceptibility to side effects of medicines 

Frailty varies in severity

Just like any other condition, the severity of frailty varies across individuals and there is a wide spectrum of disease.

Throughout the world, experts are using and trialling different ways of diagnosing, scoring and classifying frailty. Debate rages over the methods used and how appropriate and accurate they are. Typically, people living with frailty are categorised as living with Mild, Moderate or Severe disease.

The level of frailty can correlate with the level of support an individual needs - for example those with mild frailty might need very little help whereas those with severe frailty might need 24 hour support.

Help with day to day tasks 

As frailty develops, those affected are more likely to feel tired during the day and to need help with essential day to day tasks i.e. 

  • finances, 
  • transport and technology, 
  • housework and laundry
  • medication
  • shopping
  • preparing meals 

These tasks are known as “instrumental activities of daily living”.

People living with more severe frailty might have difficulty with more basic day to day tasks such as bathing, toileting, eating, and dressing.

Available treatment

Current treatment aims to reduce the risks associated with frailty and to minimise its impact by assessing and tackling:

  • Falls risks (A lot of support for frailty overlaps with care for falls). 
  • Mobility problems
  • Incontinence 
  • Cognitive impairment
  • Low mood
  • Smoking and alcohol intake
  • Social isolation and loneliness
  • Weight loss/nutrition
  • Physical inactivity
  • Vision problems
  • Medicines – stopping and starting medicines as appropriate

Depending on the circumstances a GP might involve other specialists such as a social worker, geriatrician, psychiatrist, pharmacist, dietician or community nurse. Most health centres have access to a community team of physiotherapists and occupational therapists who might also become involved.  

Ultimately, the NHS recommends that those with frailty should have a personalised care and support plan. 

Care challenges

As a relative of someone who is, or might be, living with frailty, it is helpful to recognise that they might neither seek nor appreciate this diagnosis and any related package of care. 

Research from AGE UK shows that older people do not like the term frailty and tend not to use it.  They perceive it as a perjorative judgement rather than a specific medical condition.  Consequently, the language around frailty can act as an important barrier to care .

Also, any attempts to manage frailty might not be well received  - despite the good intentions of those aiming to provide support.  Older people can resent having care packages imposed upon them, perceiving interventions which aim to reduce their risk, as interfering and unwelcome threats to their sense of control and independence.   

The AGE UK research concluded that older people living with frailty recognise that this entails living with various “losses” and many of those affected develop ways of coping by make compensatory choices in how they live their lives. 

Frailty capability is still immature

It's worth recognising that tackling frailty is a relatively new priority and that many of those involved in caring for older people are still trying to understand the condition and how best to manage it.

The NHS is promoting an array of initiatives to help health and social care staff understand the condition and to develop services which meet the needs of those affected but it's early days and a lot of effort is being directed towards hospitals and care homes rather than families providing care in the community.

What our carents say

The fluctuations were hard to understand

A frailty care and management plan could have made such a difference

The care package was very disruptive and actually made things worse not better

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Did you find this information helpful?  Let us know what you  think or pass on some advice to other carents by emailing us at [email protected]

October 2020

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