Quality of life of caregivers managing incontinence in Europe

Institute for Labour and Family Research, Slovakia: Bernardina Bodnarova, Katarina Selestiakova The Swedish National Family Care Competence Centre /Örebro University hospital, Department of Urology, Sweden: Elizabeth Hanson, Gunnel Andersson INRCA, Italian National Research Centre on Aging, Italy: Sabrina Quattrini, Sara Santini, Giovanni Lamura Vilans, Centre of Expertise for the Long Term Care, Netherlands: Roelf van der Veen, Marleen Versteeg, Sabina Mak Quality of life of caregivers managing incontinence in Europe

Qualitative research project the study focuses on the impact exerted by incontinence care on the quality of life of adult spouses, partners, children (or in- laws) caring for community dwelling, cognitively and/or physically dependent older persons (65+) living in urban areas and suffering from urinary and/or faecal incontinence on a daily basis

Research questions What are the specificities of incontinence care compared to other care tasks performed by informal carers? Which specific challenges and support needs derive from it for carers providing support to elderly with different characteristics? How can these carers’ needs be met at best?

48 interviews in total Face-to-face interviews carried out between September 2010 and January 2011 in four countries, each representing a different macro-area of the European continent The main focus of the interview is upon the experience of incontinence from the caregiver’s perspective

Caregiver’s profile In all countries women are prevalent: 100% in Italy, 70% in Slovakia, 80% in Sweden and 67% in the Netherlands. The mean age is: Italy 57 years, Slovakia 59, the Netherlands 67 and Sweden 78 years

Caregiver’s profile In Italy 31 % of the interviewed carers are working full-time while the Netherlands has the greatest percentage of those working part-time (44%). In Slovakia full-time, part-time, self-employed are quite equally distributed and almost half of the caregivers are retired (47%). In Sweden all are retired

Caregiver’s profile Relationship between caregiver and cared for person: the daughters are used to take for their old parents in all countries (63%), while sons as caregivers are few (3 in Slovakia and 1 in the Netherlands). The 48% of the sample is married with the cared for person, with a prevalence of wives who care for husbands (38%). In Italy there is only one wife.

Cared for person’s profile With the exception of the Sweden (11%), in all countries the female cared for persons are predominant: 77% in Italy, 65% in Slovakia and 56% in the Netherlands. Italy and Sweden have the higher mean age among the Countries (84 years), followed by Slovakia (77) and the Netherlands (80). The major part of cared for people has severe cognitive problems, in particular 62% in Italy, 53% in Slovakia, 22% in Sweden and 89% in The Netherlands.

Most relevant aspects of the object of the study caregiving history, daily routine of incontinence care, impact feelings and experiences of caregiving for an incontinent older family member, formal and informal supports received in caring

Sampling and recruitment Slovakia had no problem in finding caregivers who fitted the profile and wanted to participate in the study (17) Sweden had difficulties with recruiting caregivers due to the lengthy process with securing ethical approval and the committee’s requirement for formal informed consent (9) The Netherlands had difficulties finding caregivers, so they interviewed less caregivers than expected (9) Italy found only female caregivers (13)

Reasons to take care Sense of duty, love, marriage and prevention of admission to a care or residential home. Most caregivers found it natural, especially when care had become gradually more intensive over time. For almost none of the caregivers financial aspects were a deciding factor.

Problems with incontinence (care) Mostly related to have to clean and assist with incontinence very frequently or at inconvenient times of the day. Back pain, pain of joints and tiredness, were reported by the caregivers. Not only the changing of pads gave problems, also the need for constant watchfulness was considered a major issue.

Restrictions constant worry for the partner feeling tied at home less social contacts feeling locked inside the home social isolation trapped by a schedule for incontinence care limitation in career the need for reducing working time.

Feelings The change in character and relationship had a huge impact on the informal caregivers: The relation between husband and wife had become a relation of client and caregiver or parent and child. Caregivers missed the love and affection they used to have together. All countries reported feelings of sadness, shame, irritation, depression and humiliation for the partner/spouse. These were mentioned by the cared-for people but not always particularly related to their incontinence.

Support Practical help from care professionals Advice in coping and assistance (respite care) Practical advice and instruction how to deal with incontinence products and the prevention of decubitus ulcers

Findings The incontinence management is a burdensome and a very time-consuming activity that increases the difficulties deriving from caregiving for an old disabled person. Incontinence as a widespread and very common disease among old and less old people, it is still quite an unexplored item due its sensitive nature.

Recommendations It is crucial that professionals recognize and value family caregivers of older people and acknowledge their expertise. They should reach out and find carers early on in their caring as many family caregivers are elderly themselves and have health problems. For carers with responsibility 24 hours a day 7 days a week, it is important to be given sufficient help and support so that they are able to continue caring and maintain their own health. Thus in education and training programs for professionals knowledge of the carers’ situation should have much more attention.

Recommendations Policymakers should be more aware of possibilities to relief the burden of so many caregivers of patients dealing with an illness in combination with incontinence. They should look into more solutions on regional and local levels for respite moments for the informal caregivers as well as other support systems for the family networks. More awareness of the growing problem of incontinence should be tackled, and guidelines for distribution of adequate information of services and good examples of incontinence care. In research it would be useful to deepen some aspects of the incontinence care in relation with an illness such as dementia.