Short summary

The objective of this PhD project is to develop a needs assessment instrument for post-diagnostic support among family carers in families with dementia. Dementia is an illness which affects the whole family and caring for a person with dementia is described to be the most stressful type of caring. Assessment of family carer's needs in dementia is currently based on clinical experience and reasoning as no self-reported needs assessment measure exists. A needs assessment instrument may facilitate communication between family carers and health professionals, and to help offer adequate health services to maintain family carers' resources while carrying out caregiving.

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Rationale

A growing number of people are diagnosed with dementia. In Denmark at least 85.000 persons are living with dementia today and many more family carers are also living with the consequences of the illness. Dementia is an illness which affects the whole family, and caring for a person with dementia is described to be the most stressful type of caring.

Family carers contribute significantly as informal caregivers to the everyday care of persons living with dementia, but their role and challenges may not be recognized. Several studies have shown that family carers to a person living with dementia experience great burdens in everyday life, and that caring for a person with dementia predisposes to mental and physical illness, and increased risk of mortality. The costs of home care are much less compared to institutionalized care, thus emphasizing the importance of supporting family carers.

Assessment of family carers' needs in dementia is currently based on clinical experience and reasoning as no self-reported needs assessment measure exists. The subjective perspective is important because needs are experienced individually and is not always in agreement with clinical reasoning.

Living with dementia constitutes multidimensional challenges in a family. When developing and planning professional interventions to support families with dementia, a multifaceted focus on mental, physical and social needs is necessary. Especially in the early post-diagnostic stage, many families are left alone in the challenging caregiving process. Furthermore, families have a hard time accepting the need for support in the early stages, for example because of emotional barriers to accepting the diagnosis of dementia.

The Danish national guideline for dementia recommends group based psychological education to family carers and training in coping with behavioural changes in the person with dementia. However, not all Danish municipalities offers supportive services to family carers and even in the municipalities, which do offer supportive services, the number of family carers exceeds the amount of services offered. Furthermore, family carers express that their needs for supportive services goes beyond the existing initiatives.

The overall purpose of this Ph.D. project is:

• To develop a self-reported questionnaire to assess the need for post-diagnostic support among family carers in families with dementia - the Dementia Carer Needs Assessment Questionnaire (DCNAQ)
• To test the psychometric properties (reliability, structural and construct validity and interpretability) of the DCNAQ.

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Description of the cohort

Family carers are recruited by purposeful sampling to achieve maximum variation in family carers regarding age, sex, education, social background, family relation, cohabitation and time since diagnose. Several studies indicate various factors such as age, gender, relationship to the person with dementia are important to the perceived caregiver burden. Though the association between needs and burden are unknown, it provides the best indication of factors influencing family carers' needs. Furthermore, the study will include 16 health professionals working in the municipality with families with dementia, and recruitment strives at heterogeneity concerning experience, age, education and profession.

Sampling will be conducted in one Regional Dementia Clinic and one large and two middle sized municipalities in Denmark with the support of health staff as gatekeepers.

Inclusion criteria family carers: more than 18 years old, has a family member who has received a dementia diagnosis, and provides help on a regular basis because of a personal relationship rather than financial compensation and has a sufficient command of the Danish language.

Data and biological material

Semi-structured qualitative interviews and focus group interviews with family carers and health professionals:

Name

Age

Education

Habitation

Health conditions

Emotional conditions

Economic conditions

Social conditions

Experiences, opinions and attitudes related to the dementia diagnosis

 

Survey data from family carers:

Name

Age

Education

Habitation

Health conditions

Emotional conditions

Economic conditions

Social conditions

Opinions and attitudes related to the dementia diagnosis

Collaborating researchers and departments

Institute of Sports Science and Clinical Biomechanics, University of Southern Denmark

• Associate professor Henrik Hein Lauridsen DC., MS PhD

Health Sciences Research Center, University College Lillebælt, Denmark and Department of rehabilitation Odense University Hospital

• Associate professor Hanne Kaae Kristensen, PhD

Institute of Public Health, University of Southern Denmark and Department of Geriatrics, Odense University Hospital

• Professor Karen Andersen-Ranberg, MD, PhD