Living with dementia at home while at the same time needing incontinence care can be a difficult situation to cope with, both for the demented but also for their relatives and close friends. There has been little research in this area on how to guide and how to deal with incontinence in people living with dementia in their own homes. Most of the guidance is aimed at care settings and the incontinence problems that arise for the home-living dementia patients and their relatives are not always familiar. The psychological, social, physical and economic impact can be very different in care settings. Alzheimer’s Europe has investigated the problem and prepared a report with guidelines for best practice for people living at home with dementia. We have compiled a summary of this report and focus on the important elements of it.
Dementia and incontinence problems
Approximately 400 million people (or 8 % of the world’s population) experience some type of urinary incontinence. These numbers are underestimated as many people do not seek help. There are currently 44.4 million people in the world living with dementia, and this number is predicted to rise to 75.6 million by 2030 to 135.5 million by 2050.
Dementia is a serious condition that leads to memory impairment and altered behavior. Therefore, people living with dementia need daily support and care while living at home.
Incontinence is not a natural consequence of dementia but can constitute a frequent problem in people living with dementia. The incontinence symptoms can occur in the later dementia stages, when there may be orientation and memory problems. People living with dementia may no longer remember where the toilet is and may have trouble unbuttoning and unzipping their clothing. As dementia develops, the person affected by the condition will also lose the ability to perform tasks.
When the person living with dementia gradually loses their cognitive and physical skills, they will inevitably have to become more and more dependent on caregivers or loved ones. The relatives of the person living with dementia (spouses, children, children-in-law, grandchildren, friends e.g.) often take on a great number of nursing tasks and become carers. Studies show this can affect the relatives negatively in relation to poor physical health, stress, sleep deficit, signs of anxiety and depression and most often can be isolating.
Further on in this document when we talk about the caregiver, we distinguish between the helper who is usually a family member (caregiver) and the professional (healthcare professional) who is a trained healthcare worker.
What are the needs and wishes of people with dementia with incontinence problems and their Caregivers?
Alzheimers Europe has consulted both people living at home with dementia with incontinence problems, and their caregivers. Here are some of their statements:
People with dementia:
- “We have a lot to offer. We would like to live as normal as possible and remain active and equally valued members of society”.
- Independence, avoid being unnecessarily dependent on others. For this to be possible there should be appropriate care, well treated dementia and well treated incontinence problems.
- Freedom of choice regarding the type and quality of continence products offered – there are no solutions that fit everyone.
- Don’t want to be confined to the home--caregivers must respond to the needs and wishes of people with dementia to travel and play an active role in society.
- “In our capacity as caregivers, we would like to benefit from appropriate support and training to enable us to provide continence care to the best of our abilities”.
- Recognition that not everyone has nursing skills. There are personal limits and varying levels and types of incontinence support.
- Providing continence care to a relative or close friend can have an emotional and psychological impact on carers - often taking for granted that caregivers will cope. The caregivers need understanding, greater sensitivity and support from healthcare professional providers.
- Difficulties in the communication and understanding can cause resistance from the demented. In such cases, assistance from healthcare professionals should be provided.
- Caregivers often have to undergo certain cost linked to the continence care they are providing such as laundry, cleaning cost, adaptations to the home, transporting costs and lost time in paid employment- they would appreciate recognition of the financial impact and if possible compensatory measures should be made.
With these statements from people living with dementia and incontinence in their own homes and their caregivers, it’s important that social and healthcare professionals have the necessary expertise in relation to supporting the caregivers and the demented to help improve the quality of life for both.
Examination and any interventions can be organized in cooperation with both the person and caregivers. Scheduled toilet visits, combined with training of staff, can reduce the number of episodes of urinary incontinence in people with dementia. Bladder training or pelvic floor training are effective against urinary incontinence in people without dementia and may also have an effect in people with mild dementia, but are not relevant in people with moderate to severe dementia.
With a wide range of measures and tools, you can create a better everyday life and thus a strengthened quality of life for the demented and their relatives. Continence care at home should be provided within an ethical framework of care which includes involving the demented in care-related decisions, with consideration being given to their dignity, vulnerability and individualization. It’s also important to take care of and support the caregiver, including practical, emotional and financial support in relation to preventing stress, poor health, depression, anxiety, social isolation, etc.
People living with dementia should have the same rights as people without dementia and have access to a full continence assessment and management of incontinence problems conducted by a trained health care professional. We must provide that guidance with the aim of reducing continence issues to a minimum for the individual, with autonomy and dignity being maintained.
Elderly people can have many physical, psychological and social causes of urinary incontinence. Examples include urinary tract infections, constipation, a damaged or aging uterus, an enlarged cervical gland, enlarged prostate, medication (e.g. diuretics), poor mobility (e.g. caused by arthritis and dizziness.)
As in elderly people without dementia, the person living with dementia may also be challenged by these physiological causes and it is important that these are considered and the cause found and treated. The cause should not automatically be assumed to be dementia.
The incontinence diagnosis finds the underlying cause so that symptoms can be treated. It must be carried out by health professionals such as a continence nurse specialist, in collaboration with the general practitioner who knows the patient best. The person living with dementia can also be referred to a urologist or gynecologist when there are physiological changes.
The continence nurse specialist can carry out a thorough assessment in collaboration with the person living with dementia, if he or she is able to participate. Relatives or caregivers can also contribute where needed.
It is also important to take into account whether the caregivers and healthcare professionals have received training in how to communicate with people with dementia.
Assessment - what is useful to know:
How is incontinence experienced - is it urge, stress, a mix of the two, or bladder overflow or functional incontinence?
Are there symptoms of UTI? Positive urine culture?
Are there symptoms of enlarged prostate? (flaccid urine jet or constant dripping of urine)
Pain while trying to urinate?
Stomach function-constipation, diarrhoea, daily stool?
What is the fluid intake and output?
Medical side effects including polypharmacy
Chronic diseases and are they well treated?
Are incontinence products used and what type? Aids?
Well treated dementia condition?
Housing conditions – are there obstacles in relation to toilet use, including light?
Previously diagnosed for incontinence or urological diseases?
Our commitment and recommendation
Healthcare professionals must work with individuals and establish the best care and treatment plan including advice for the person living with dementia and their caregiver(s)- this could be an invasive or noninvasive treatment depending on the assessment in each individual case. The correct procedure should be followed in situations where it has been established by relevant experts, that the person living with dementia lacks the capacity to make a particular decision about their care. This will differ in each country depending on national legislation covering decision making in the case of incapacity.
The continence care of people living with dementia at home should be understood within the global context of long-term care of people with complex care needs. All too often, the caregivers of people with dementia and continence problems are expected to provide continence care even though they have received no training and they may have difficulty coping with such intimate care while tending to additional family and professional responsibilities. It’s important in these cases that the healthcare system ensures access to information about dementia (causes, symptoms, possible future difficulties with continence) and support and training in the period following diagnosis, so the person living with dementia can be cared for in the community for as long as possible.
Health and social care professionals, as well as service providers, must take into consideration the needs and wishes of informal caregivers who often play a vital role in ensuring good continence care for people living with dementia at home. Continence assessment, care and treatment options should not be restricted solely in relation to the person who is living with dementia.
It’s also important to have access to a full range of continence care options (medication, training, care, incontinence products and surgery as a last resort) to maintain independence for as long as possible and respect dignity and quality of life.