"It's not just about hte person with dementia- it's about the whole family". An interview study of the experience of dementia, it's impact on the family and menaning of Family Health Conversations as an intervention to families with dementia

Publikation: Ph.d. afhandling/ kandidat/ diplomPh.d. afhandlingForskningpeer review

Abstract

Introduction: Dementia is the greatest global challenge for health and social care in the 21st century.
Dementia does not just affect the person with dementia, it also affects and changes the lives of family
members who must watch their family member worsen from the dementia illness.
Living with dementia can be understood as an unsettling experience: the people concerned enter an
uncertain, unpredictable and ambiguous period of life. The experiences of living with young onset
dementia are unexpected due to young age and that other people are less likely to understand what
the diagnosis means, which often results in social isolation for the person with dementia. Research
exploring the experience of living with young onset dementia is sparse. Especially in a Danish
context, where this patient group has received large political interest these years, because the local
services until recently have been focused on older people with dementia and their needs, and the
group of persons with young onset dementia have been overlooked.
A person with dementia depends increasingly upon informal caregivers, typically close family
members, to help them with activities of daily living, as well as displaying challenging behaviours
and facing safety issues. Families are the major providers of unpaid care outside of institutions for
individuals with dementia. Being a relative to a person with dementia is described in the literature as
being the "invisible second patient". It is a stressful and difficult task as the behavioural and
psychological symptoms of dementia present a significant burden to the families and caregivers of
the person with dementia. Additionally, being a caregiver to a person with dementia is a risk factor
for psychological stress and getting physically ill.
Family caregiving is widely recognised as the backbone of informal care for dementia. The World
Alzheimer Report from 2016 states that even when dementia is diagnosed, the care provided is too
often fragmented, uncoordinated, and unresponsive to the needs of people living with dementia, their
caregivers and families. The World Alzheimer Report 2018 states that there is a need for more
research and innovation around dementia care, especially in domestic settings.
This PhD study contributes to develop and qualitatively evaluate a systematic and coordinated
intervention to families in dementia care, called Family Health Conversations. The intervention
originates from Family Systems Nursing, conceptualised by Wright and Leahey, focusing on the
128
family as the unit of care. The theory has a bold statement that the family has a significant impact on
the health and well-being of individual members and illness needs to be treated as a family affair.
Aim: The study aimed at exploring persons with young onset dementia's experiences of having young
onset dementia, the families’ experience of being related to a person with dementia and the impact
on relations within and across the family. Furthermore, to implement Family Health Conversations
as an intervention to families with dementia and explore its meaning to the family.
Method: the study comprised a qualitative research design and was theoretically and
methodologically informed by hermeneutic phenomenology. The study was conducted by using
semi-structured interviews inspired by Kvale and Brinkmann, and data was analysed using Braun et
al.'s model for reflexive thematic analysis.
Three sub-studies were included in the PhD study:
I. In-depth, semi-structured interviews with 17 family members to persons with dementia to
explore the experience of being related to a person suffering from early-stage dementia.
II. In-depth, semi-structured interviews with nine persons with young onset dementia to
explore and describe the experience of having and living with young onset dementia and
thoughts about the future.
III. In-depth, semi-structured interviews with 15 family members from seven families to
investigate family members’ experiences of engaging in Family Health Conversations and
what the intervention meant to them both as persons and as a family.
Results: The results showed that dementia impacts on both the person with dementia and their family
members as individuals, but dementia also has a large impact on relations within and across the
family.
Study I showed that a dementia illness has a large impact on relations within and across the family.
Relatives were forced to change their roles within the family and the dependency between siblings
and the healthy parent changed.
Study II showed that dementia influenced the thoughts and memories of the person with young onset
dementia, as well as their sense of self and personality. This experience caused feelings of losing
control. The participants experienced the relations to family as changed and these changes caused
129
feelings of fault and a guilty conscience towards both partners and family members. The persons with
young onset dementia felt like a burden to their family and there were issues too difficult to talk about
within the family.
Study III showed that Family Health Conversations had great significance to both the individual
family member and the family. Family Health Conversations created possibilities for families to share
feelings, experiences, and burdens related to the relative with dementia. Though, at the same time, it
was found that Family Health Conversations were not necessarily beneficial when involving the
relative with dementia who lacked insight into his or her disease. The Family Health Conversation
seemed to contribute to ensure the involvement of the person with dementia, and at the same time
having a significant impact on the well-being of the family. Surprisingly, the participating families
often had positive narratives about how dementia brought their family closer together.
Conclusion: This study concludes that dementia illness has a large impact on relations within and
across the family and that the dependency to each other within the family changes. This study
concludes that Family Health Conversations have great significance to both the individual family
member and the family, in supporting the family members during these changes, even though
involving the person with dementia in all the Family Health Conversations is not always beneficial
for the family. The dementia illness influences the thoughts and memories of the person with young
onset dementia, as well as the sense of self and personality. This contributes to the conclusion that
Family Health Conversations can retain selfhood and promote the autonomy of the person with
dementia, even if the person with dementia does not participate.
Implication for practice: In the light of this study, there is a need for attention and further research
on how to promote the adult-children’s health and to avoid them becoming new invisible patients.
There is still a need for further research in the field of family-focused dementia care.
OriginalsprogEngelsk
KvalifikationDoktor i filosofi
Bevilgende institution
  • Syddansk Universitet
Sponsorer for afhandling
Bevillingsdato25 maj 2020
UdgivelsesstedOdense
Udgave1
Udgiver
StatusUdgivet - 25 maj 2020

Emneord

  • Sundhed, ernæring og livskvalitet

Citationsformater