Module 1

Learning objectives for Module 1

To improve your understanding of why dementia and different mental health needs can make it difficult for people to accept social care

In this module you will explore:

  • Dementia, mental health problems, and social care in later life
  • The consequences of care arrangements collapsing
  • Common ‘storylines’ that can help to improve your understanding of engagement problems
  • What can go wrong when delivering care
  • What is it like to be confronted with unwanted care
  • Family and older people’s experiences of difficulties receiving care

Module 1: INDEX

Many people in later life find that they need help with everyday living.  This may be because of physical health difficulties, cumulative frailties, fatigue, mental health problems and dementia, learning difficulties or disabilities continuing into old age, sensory impairments, amongst many potential causes.  Often support with daily living can be provided by family members or friends, but in other circumstances it requires formal social care services.

Although many older people find themselves needing help with everyday living, not everyone finds it easy to accept social care.

  • Why might some people find it difficult to accept social care? 
  • Is it only people with mental health needs? 
  • What complications might dementia add to this?

Finding it difficult to accept social care is common. ‘Care’ is linked in many people’s minds with a deterioration of abilities to look after oneself, and can cause significant stress.  What ‘needing care’ means to people, and what they may worry about, will vary from individual to individual.  

For some, the need for social care signals a loss of independence. The idea of being dependent on others for everyday activities sits uncomfortably with many people.  It may challenge how they see themselves, as no longer being an independent man or woman.  It may also prompt fears about how other people see them: people may fear being labelled as frail or dependent, and have concerns about what it may mean for how they are treated by others.  Will people think they are now a burden on others, or on society?  

Needing help with intimate personal care also challenges people’s ideas of dignity in later life.  Having strangers or unfamiliar people see you undressed or unwashed, or needing help with toileting, can feel humiliating or like living a second childhood.  

It is also important to consider whether people’s prior experiences could have an impact on receiving care.  It may be that they have had poor quality care or a bad experience previously. Potentially, it may bring back echoes of other significant life events, such as hospital or health scares.

An important consideration for some people is how needing social care might signify what the future holds.  Research has indicated that needing ‘care’ can be interpreted as the beginning of a period of physical and mental decline. Will things only get worse from here?  How long will I be able to stay in my own home?  It may trigger concerns about health problems and even the prospect of end-of-life.   

It is important to remember that not everyone feels like this. How the need for social care is interpreted is very personal.  Many interpret care as being a positive help in maintaining and recovering their independence, in spite of an ageing body, illness or frailty.  Others will feel safe and secure, knowing that they are being supported to live as independently as they can.  Some may see receiving social care as alleviating a pressure on other family members, who had been providing care until this point.  Others may not think about it much at all!  

Dementia is common in later life, affecting 1 in 6 people beyond their eightieth birthday. Other mental health problems are even more common, with depression affecting around a quarter of all over 65s.  Other conditions include psychosis and delirium.  

These conditions can make daily living more difficult, and may contribute to other physical health problems, making social care needs more likely.  However, evidence also suggests that those with dementia or other mental health needs have even more difficulty than others in accepting help with social care.  

The presence of mental health difficulties can amplify the problems (see above) encountered when needing social care.  For example, growing social care needs can compound worries about loss of independence that dementia might be imagined to bring. Social care needs can also extend anxieties around how families and social networks might treat someone with a mental health or dementia diagnosis. Some studies have found that social care providers do not always accommodate mental health needs well in their services, and poor experiences can lead to engagement difficulties. Fear for the future, and further losses and physical and mental decline, can grow.

However, mental health difficulties and dementia also give rise to other challenges in accepting care.  Where cognition is affected, individuals may experience a lack of insight into their own needs. They may perceive that they do not face any difficulties with daily living, whilst others around them have observed important changes, and have concerns about safety and wellbeing.  

A common change in dementia and some mental health difficulties is in how people communicate.  People may no longer be able to express their needs and wishes the same way they used to, and may not be able to receive and understand information in the same way.  This can cause substantial frustration, but also lead providers and care workers to exclude the older person from decision-making.  

Other problems include pervasive low mood, such as in depression, but also common in dementia and other mental health difficulties, can lead to low motivation and apathy for engaging in social care.  This can commonly lead to poor self-care and self-neglect, and is a serious challenge for care provision.  

Difficulties engaging in social care, despite an apparent need for it, can manifest in lots of different ways. Sometimes an individual will refuse entry to care workers.  In other instances, care will be attempted but there will be a range of verbal or physical efforts to communicate that it is not wanted.  It can happen in any aspect of care. It is most obvious in personal care, and especially where it involves sensitive or intimate areas of the body, including dressing, toileting, bathing and oral care or feeding. 

How people signal that the care is not wanted can vary. For many people, where communication and cognition is largely ‘intact’, it is clear from what they say that they are unhappy with care provision, and they will choose not to cooperate with it. For those with more impaired cognition, other signals may be given.  Physical actions can range from quite overt acts (pushing away, swinging arms or legs) or else avoiding or withdrawing from care (stepping away from the carers, stiffening limbs).

Some people (especially academics) call this “resistance-to-care”, or refer to it as “challenging behaviour”.  However, we should remember that care involves (at least) two people in a caring relationship, and our language might assume that the difficulty is with “them”.  What is happening is more complex.  We will use the term “engagement difficulties” in this material to refer to those of whom services have had difficulties engaging.

Does it matterEngagement difficulties are quite common.  Although there are no precise statistics, some studies have found that 7-15% of older people receiving home care are ‘resistive to help’ (Wergeland JN et al. 2014; Skovdahl K et al. 2008 ; Kuronen M et al, 2015); in one dementia study this rose to 30%.’ (Wergeland JN et al. 2014). Further research identified that those who had similar difficulties were (in 49% of cases) at risk of care home entry (Risco E et al. 2015).

For older people and family carers, the distress caused by these engagement difficulties is often acute.  Older people may not understand what is happening or they feel that their sense of autonomy and competence is being threatened or questioned.  Family carers may fear for the wellbeing of their loved one, and may face the anxieties and pressures of providing ongoing care themselves which can contribute to burnout.  Formal care workers may also find it stressful to support people not engaging well with care.  With client aggression, self-neglect and depression being reported as the most stressful challenges facing home care workers

Over time, care needs can build and become more pressing often leading to chronic self-neglect; which in turn is suggested to increase the likelihood of social exclusion and antipsychotic medication use.  Unmet care needs can also result in a need for more urgent intervention from mental health or social services, with there being an increased chance of hospitalisation, or with the older adult having to be admitted into a care home.  One study found that those who were considered to be ‘resistant’ to care were 2-3 times more likely to end up in a care home or psychiatric unit compared to those who were not (Challis et al., 2014).  There are also additional risks such as being prescribed antipsychotics, which can have worrying side effects.  

Our research heard many examples of how engagement difficulties came about, which are discussed below.

The research suggests that there are some common “storylines” that might help to understand engagement difficulties.  

(i) Protecting social status

We heard that some older people appeared to have more difficulty accepting care due to an assumed loss of status or social standing. This was most apparent when receiving care from  younger staff. A little exploration into someone’s history can help to understand this. 

One older person, in her working life, worked in a high status occupation, and she would normally have younger staff working in more junior positions.  It seems that this person was perceiving the tables to have turned: young staff now telling her what to do. This was challenging to her, and seemed to clash with her status as a senior executive.  

Some culturally-specific factors were also identified. The choice of words conveyed a sense of respect and seniority in some languages and cultures, and where care workers would use over-familiar titles and terms, this may easily cause offence and make assumptions about status.  

They were happy with [a care service] but then when the person turned up, he didn’t want to go out with them ‘cause they were too young.  He felt like that he was just taking a kid out, sort of thing.  He didn’t see how they could help him, sort of thing.  He felt that he was going to be helping them.  So that did break down a little…well, it did break down.  It ended up that he didn’t have any care at all.  (Specialist support worker)

Others considered that younger care workers would not have shared life experience in order for them to relate to each other, or that the older person would see them as of an age more akin to grandchildren, so may be reluctant to allow them to help. 

(ii) Independent-minded

Other stated that service users were often quite private people, combined with always having being independent;

In terms of the care the situation was my parents were both in their mid-90s, and both of them had health conditions. My mum was in a situation where her mental health was deteriorating, and that was over a period of months, but they were both very independently minded. And so they were quite resistant to help, so that was an issue throughout really that sometimes we managed to get help for them and they managed to reject it all and go back to how they were before. Because for a long time they attempted to cope on their own. (Carer)

(iii) Duty to care

For carers, having a feeling of ‘duty’ towards the service user was also evident. However, this was often driven by the care on offer not being acceptable for various reasons, such as: a lack of flexibility in provision (e.g. in terms of not fitting into the service users routine), or poor engagement of the service user in meaningful activities. Such as the example below: 

One of the carers that came in, they would write down what they’d done, they would…it was made very clear that if you asked dad what would you like to eat, he would say I’m alright, I’ve just had something, and he hadn’t had something.  So then they would just walk away, and he wouldn’t have anything to eat. (Carer)

Other factors that contributed to a sense of duty, and dissatisfaction with service delivery such as the lack of culturally appropriate care available.  Examples included care workers discussing topics that were not culturally appropriate with the service user, such as: eating beef, methods of contraception, and not addressing the older person in a way that is culturally appropriate: 

So cultural awareness, and how you address someone, she’s never asked in six years, how would you like to be addressed.  Now, strictly speaking, my sister’s first Gujarati name is [female name] ben, B-E-N means sister, B-H-A-I, bhai means brother, so somebody younger than me would say [male name] bhai means brother [male name], whereas [female name] is her first Gujarati name, [inaudible 08:35] means sister so it means sister [female name] ben.  So she should really say [female name] ben, but in six and a half, six years, she’s always said, Mrs [initial], Mrs [initial].  Now, somebody else could object to that, find that quite offensive, why is she calling me Mrs [initial], sister’s surname is Mrs [surname], but she doesn’t even make an attempt to say, Mrs [surname], she says, Mrs [initial]. (Carer)

There was also often an expectation that care would be delivered through family members: 

she [service users sister] did do her shopping for her because she knew she wouldn’t go out and get anything herself.  She did go and get her pension, she did make sure that her bills were paid and all those sort of things that she couldn’t do herself without…but she never…the lady in question never ever thought that that was…she never considered that or didn’t appear to me to consider that as help, it was almost like it was expected because she’s my sister so she will do it. It’s not like somebody coming in and doing it for you, it’s just a case well, you know, if I can’t do it, then she has to do it sort of thing. (Support worker) 

(iv) Anxieties about repercussions

A state of tension was felt by informal carers, linked to a fear of feeding back to care services about bad experiences in case of repercussions. There were others who were fearful of repercussions where feedback was not actively encouraged and where carers were inexperienced in feeding back in a constructive way. 

The regular lady who comes who we are fond of, we do like her coming in preference to others – there is that dilemma.  On the one hand, she’s punctual, she’s reliable, there’s the issue of familiarity, she knows sister, she knows what needs to be…she knows the house, she knows our preferences and the way we want things doing.  If we make a complaint about her, the fact that she cuts corners, she’s always in a rush and she leaves way beyond the time we pay for, we get somebody else, we get another care worker  (Carer)

(v) Fearful of the future

Both carers and service users were often found to be fearful of the future and therefore did not plan well for it. Research by Durand et al (2009) found being fearful of the future to be one of the main reasons for resisting care along with older adults being fearful of allowing new people into their home, and being fearful of being put into a home or of losing their independence. Additionally, a lack of willingness to use respite services was found to be associated with the ability of the service to personalise care as well as the quality of care. If carers felt their family member / friend was not able to engage in meaningful activity (allowing them to maintain their interests and / or hobbies) during their stay they were reluctant to relinquish control over their loved ones’ care (Gilmore, 2019)

This is demonstrated in below, with the need to take a tailored and sensitive approach being emphasised: 

Yes.  It’s been very much where we’ve had to say you know dad, to start off with, it’s just until you can get independent again.  We knew that it wouldn’t…  If anything, his care needs are going to go up, but we’ve got him to a point now where he accepts his carer going in, and quite looks forward to seeing her.  So it’s been…I think that that acceptance…people think that, you know, because they turn away services, they think oh well they don’t need it.  It’s not that they don’t need it, it’s just that they need that preparation to accept services.  And it’s just got to be done in a very sensitive way.  And now, you know, dad’s very grateful for the support, you know, when [female name], his carer, goes in, he says ee I love you, thank you ever so much, and, you know.  And she says he’s an absolute pleasure to look after.  Whereas before he would get sort of angry and not like physically aggressive, but would be a bit rude to the carers, which isn’t dad, but I think it was just the way that he was approached. (Carer)

(vi) Poor continuity of care

A lack of continuity of care affected also both informal carers and service users, as did support workers not staying for the designated amount of time when visiting. This primarily appeared to be due to the difficulties it creates when trying to build a trusting relationship

I have a lady who I worked for for round about three years and initially when I went in she did have a care package and she did used to let one certain carer give her a shower, but as I got involved the care package broke down due to lots of reasons, one being inconsistent with the carers.  She would say, well, it’s a different face every time someone comes in.  How can I build relationships with people if I don’t know who they are, she would say?  She used to be really on the ball and understandable, she’s letting these strangers into her house (Support worker)