Informal carers are the key providers for the care of people with dementia. Most of those care aspects are often attributed to negative associations, such as increased burden and stress. But there is also anecdotal evidence that carers report positive aspects for caring with someone with dementia. A recent study investigated the carer perceptions of the positive and negative aspects of caring for someone with dementia. More importantly, the researchers explored which factors determined the positive and negative experience in informal carers. The results are intriguing and revealing.

Across most of the developed world, the care for people with dementia is provided by their spouses and family members. This so-called informal care, which is distinguished from formal care provided by professionally trained care or nurse staff, forms the heart of dementia care for most families dealing with dementia.

From previous research we know how exhausting this informal care can be as the demands can be relentless on a 24/7 basis. It is therefore not surprising that many interviews with informal caregivers reveal high levels of burden and stress.

But what about any positive aspects of caring for someone? And which factors determine whether we have more likely a positive or negative experience of caring for someone with dementia?

A new study tackles these questions by looking across all previous studies to date (including a total of 3,347 carers) conducted on the negative aspects of informal care. Importantly, they did not stop there but also checked all studies reporting the positive aspects of informal care in a total of 3,347 carers across different countries.

The researchers found that the majority of the studies in this field focused on the negative aspects of dementia, such as burden and stress, with very few studies asking carers for their positive experiences. This is somewhat surprising as it is clearly important to know as well the positive aspectswhen caring for someone with dementia.

Most importantly, the researchers also asked the carers opinion on which factors contributed to these positive and negative care experiences. Having knowledge of these factors would then allow us to foster the ones contributing to positive informal caring experience and reduce the ones contributing to a negative informal caring experience.

What positive and negative aspects did they find in their study?

The results showed that in the opinion of the informal carers, the following were positive aspects of caring for someone with dementia:

Positive aspects

• Personal accomplishment and gratification/strengthening of the relationship
• Be able to support family and return the favour
• Be able to do meaningful activities together
• Ensure the dignity of the relative

The factors which helped with such positive experiences were reported by the carers as follows:

Positive factors

• Useful instructions or information about dementia
• Good home care/day care services and homelike facilities
• Access to good medical support for caregiver and the person with dementia
• Can count on old friends
• Support groups
• Having family support
• Having free time for themselves
• Early diagnosis/relief after the diagnosis

Now, let’s turn to the negative aspects reported by informal carers when looking after someone with dementia:

Negative aspects

• Stress, loss, grieving, guilt and sad feelings
• Feeling alone and desperate for help
• Exaggerated precautions with vigilance and safety issues
• Problems with acceptance and dealing with the diagnosis
• Problems related to food issues
• Obligation to be a carer for lack of alternatives
• Uncertainty/fear about the future and loss of hope
• Social isolation
• Not being recognised by the relative
• Loss of old friendships

Again, let’s look at the factors which contributed to the negative experiences for carers:

Negative factors

• Constant changes in formal care teams and prolonged process of diagnosis
• Decision- making process without medical counselling
• Bad home care service/long waiting list in formal care
• Weak support groups
• Weak explanation of disease at the time of diagnosis
• Daily progression
• Behaviour problems
• Sleeping problems and night agitation
• Person’s comorbidities
• Bedridden relative
• Person’s dependence on activities of daily living
• High costs of formal care/medication and assistance
• Have to quit job or reduce hours

Let’s try to ‘unpack’ now all this information. There are clearly many positive and negative aspect mentioned. But instead on dwelling on those, let’s focus instead on the factors which in the carers opinions determined their positive and negative care experiences, as we can potentially change them.

Support

One key factor for both positive and negative experiences, is the level of support (or lack thereof) from formal care and clinical teams, as well as family and friends or support groups. This seems nearly too obvious but the importance of this factor shows again how critical a good support network is to have the best possible experience as an informal dementia carer.

Based on this we should encourage all informal dementia carers to have – or build – a strong support network. Unfortunately, the stigma of the dementia label is still strong and understandably many families are reluctant to talk openly in public about the diagnosis and symptoms. But the results of the above study show that it is better to be open about the condition with as many people to build a strong support network.

The results for professional support also suggest that carers should challenge the care and clinical teams if they are not happy with the services provides. This can be clearly awkward to do but the data shows again that if we have better formal care and clinical teams we will have a more positive caring experience. If you can ‘shop therefore around’ and do not be afraid to get a second opinion.

The same applies to dementia support groups. If you are not happy with your current support group, look for other groups. For most regions, there are now several groups available and maybe the next one will suit your needs much better. I would, in particular, recommend this for people who care for someone with a rarer form of dementia, for which there are specialised support groups.

Information and education

The second key factor emerging from the data is that the level of information and education on dementia carers receives makes a big difference to their care experience. Clearly I am a big supporter of this factor, otherwise, I would not provide the information on this website. All my years in talking to carers I have found that there is a great interest and need to have as much information as possible on the condition.

However, there is currently clearly a gap in providing sufficient information and education for informal carers. Some dementia charities and support groups offer already excellent information and education. But this information is not available to all carers at the moment, in particular on how to deal on a day-by-day basis with the symptoms caused by dementia.

For example, there are many techniques available to deal with behavioural symptoms or sleep problems but only professional carers are currently taught them systematically. Similarly, there are many guidelines and technologies available for dealing with changes in everyday living. There is clearly a need to close this gap between formal and informal carer information and education, which according to the above results is critical. Let’s not forget that knowledge is power and therefore more knowledge will empower carers in their care experience.

Financial stability

The final key factor emerging from the data is financial stability, which seems the hardest to address as it depends on carer’s socioeconomic background. Still, regardless of your socioeconomic situation, it is worth to investigate as much as possible which financial support is available to you and your loved one.

Many people might feel awkward to ask for financial support, in particular, if they have been financially self-reliant all their lives. But again the data shows that if we can avoid or mitiagate financial problems we can potentially avoid some of the negative consequences when caring for someone with dementia. The last thing a carer wants to do is to worry about money when being already so busy with the care for their loved one. If carers struggle with the financial aspects, then consider asking family or close friends to help you.

Summary

In summary, the findings of this study show that 1) having a good private and professional support network, 2) knowing a lot about dementia and its treatment and 3) being financially stable will provide the factors to have the best possible experience as an informal dementia carer.

Of course, there will be other, personal factors, not captured by the research which will influence the carer’s experience but this list is a good point to start from. It is again the knowledge of these key factors which will allow carers to reduce the negative aspects and foster the positive aspects in caring for someone with dementia.

Taken together the key message seems to be to ask for help, support and information as much as you can. It will make all the difference in your dementia journey.

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Impact of dementia on informal care: a systematic review of family caregivers’ perceptions. Lindeza P, Rodrigues M, Costa J, Guerreiro M, Rosa MM. BMJ Support Palliat Care. 2020 Oct 14:bmjspcare-2020-002242.

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