Living with a partner with dementia

Living with a partner with dementia: a systematic review and thematic synthesis of spouses’ lived experiences of changes in their everyday lives  | Aging & Mental Health | Feb 2018



Objectives: Dementia causes dramatic changes in everyday-living for spouses. Occured changes in marital relationship, force spouses to perform more both mentally and physically. Leading to a spousal perceived burden. To improve understanding of spouses’ needs, spouses lived experiences is needed. The aim was to identify and synthesise qualitative studies on spouses’ lived experiences of living with a partner with dementia.

Methods: A systematic search was undertaken in January 2017. Six databases (CINAHL, Cochrane Library, Embase, PubMed, PsycINFO and Sociological Abstracts) were searched, using search terms in accordance with PICo. A descriptive synthesis and a thematic synthesis were undertaken.

Findings: Fifteen studies met the inclusion criteria. Three themes derived from the analysis 1) Noticing changes in everyday life 2) Transformation to a new marital relation in everyday life, with corresponding sub-themes; changes in marital relationship, management of the transitioned marital relation in everyday life 3) Planning the future.

Conclusion: Findings provide an overview of how spouses notice changes and transform their marital relationships in everyday-life. Findings offer a deeper understanding of changes that occurs over time while the partner is living at home. Findings contribute with knowledge on spouses’ experiences of changes in early-stages of dementia. Interventions supporting spouses are needed.

Full reference: Living with a partner with dementia: a systematic review and thematic synthesis of spouses’ lived experiences of changes in their everyday lives | Barbara Egilstrod, Maiken Bay Ravn & Kirsten Schultz Petersen | Aging & Mental Health | Published online: 06 Feb 2018

Promising Approaches to living well with dementia

According to Age UK, 1 in 3 people with dementia are not receiving the NHS support they need.  Age UK has warns of an urgent and growing need to provide much better support for individuals diagnosed with dementia.  The press release is available here 

In response to these findings, Age UK has published a report which outlines a  a number of interventions that are evidenced, cost effective and scalable, and which could be replicated by NHS Trusts, care providers and primary care services.

promising approaches to dementia
Image source: Age UK

This report  focuses on  what works in supporting people with dementia to live well –looking at services and supports beyond the traditional domains of health and care services.It was developed through a programme of work rooted in a rights-based approach to
dementia, and in the social model of disability. The programme focused on what people with dementia told Age UK ‘living well’ meant to them.


The key factors identified were broadly grouped under three domains of quality of life:
• personal wellbeing
• positive relationships
• active daily lives.

The report showcases approaches which relate to these three domains, either directly or by  improving key aspects of life which people with dementia said were related to their quality of  life (such as social connection, sense of self-worth, getting on with day-to-day activities).

It also proposes a new framework for understanding these approaches, to help to make sense of the way in which these approaches could be brought together in communities. Alongside this it also signposts interventions, and  there are also a number of case studies from a number of organisations, programmes and services.

Age UK| Promising Approaches to living well with dementia 

The report can be downloaded from Age UK here 


Study finds increased risk of dementia for adults with congenital heart disease

According to new research published in the American Heart Association’s journal Circulation, adults with congential heart disease (CHD) could be at a higher risk of developing dementia compared with the general population, particularly for early onset dementia.  The Danish cohort study, included 10, 632  CHD survivors in the sample; for each CHD adult, 10 individuals from the general population were randomly sampled and matched on sex and birth year.

This study found the risk of all-cause dementia was increased by =60% compared with a matched general population cohort. The risk was higher for early onset dementia (under 65 years of age; more than double) than late-onset dementia (=30% elevated risk) and was elevated for all levels of congenital heart disease complexity,  including those with cyanotic potential.

The study’s key findings are:

  • Adults with congenital heart disease are at increased  risk for dementia, particularly early onset dementia, and these results support the importance of understanding the risk of adverse long-term neurological outcomes in the growing and aging population with congenital heart disease.
  • Although it remains unknown whether the results  are directly generalizable to children diagnosed today, they appear relevant for the large population
    of adults with congenital heart disease alive today.
  • In the absence of disease-modifying treatments for  most dementias, the specific influence of etiologic factors on congenital heart disease is a potential
    target for future investigations to delay dementia onset in this vulnerable population


Background—More children with congenital heart disease (CHD) are surviving to adulthood, and CHD is associated with risk factors for dementia. We compared the risk of dementia in CHD adults to that of the general population.

Methods—In this cohort study, we used medical registries and a medical record review covering all Danish hospitals to identify adults with CHD diagnosed between 1963 and 2012. These individuals with CHD were followed from January 1, 1981, 30 years of age, or date of first CHD registration (index date for matched members of the general population cohort) until hospital diagnosis of dementia, death, emigration, or end of study (December 31, 2012). For each individual with CHD, we identified 10 members of the general population utilizing the Danish Civil Registration System matched on sex and birth year. We computed cumulative incidences and hazard ratios (HRs) of dementia, adjusting for sex and birth year.

Results—The cumulative incidence of dementia was 4% by 80 years of age in 10 632 adults with CHD (46% male). The overall HR comparing adults with CHD with the general population cohort was 1.6 (95% confidence interval [CI], 1.3−2.0). The HR among individuals with CHD without extracardiac defects was 1.4 (95% CI, 1.1−1.8). Adults with mild-to-moderate CHD had an HR of 1.5 (95% CI, 1.1−2.0), whereas the HR was 2.0 (95% CI, 1.2−3.3) for severe CHD, including univentricular hearts. The HR for early onset dementia (under 65 years of age) was 2.6 (95% CI, 1.8−3.8), whereas the late-onset HR was 1.3 (95% CI, 1.0−1.8).

Conclusions—CHD was associated with an increased risk of dementia compared with the general population, in particular for early onset dementia. Further understanding of dementia risk in the population with CHD is a potential target for future investigation.

Abstract from American Heart Association’s Circulation 

Full reference: Carina N. Bagge, C. N. et al | Risk of Dementia in Adults with Congenital Heart Disease: Population- Based Cohort Study | Circulation |Doi:

The full text article can be accessed here 

The full story is at Science Daily 

More support needed for thousands of informal dementia carers

Involving family members and friends who serve as ‘informal carers’ for people with dementia could offer improved insights for healthcare professionals, and help alleviate feelings of stress, guilt and isolation felt by many who fulfill these dutiesDementia | via ScienceDaily

There are an estimated 46.8 million people worldwide living with dementia in 2015, being cared for usually by family members or friends (informal caregivers). The challenges faced by informal caregivers often lead to increased levels of stress, burden and risk of care-recipient institutionalisation.

The overarching aim of this study was to explore the experiences and perceptions of informal caregivers of people with dementia when interacting with the health care system, and whether the support received acted as a mediator of caregiver stress. The secondary aim was to investigate healthcare professionals’ views and current practice regarding people with dementia and their interactions with informal caregivers.

We employed a qualitative research design, using focus groups and one face-to-face interview with a purposive sample of informal caregivers and healthcare professionals in Lincolnshire, UK. Data were collected between March and July 2015. We used the stress-process model of stress in caregivers as a theoretical framework.

We interviewed 18 caregivers and 17 healthcare professionals. Five themes, mapped to the stress-process in caregivers’ model, captured the main challenges faced by caregivers and the type of support they wanted from health care services. Primary stressors included the challenge of diagnosing dementia; caregivers’ needs and expectations of an in-depth knowledge and understanding of dementia from healthcare professionals; and need for carer education. Secondary role strain included lack of support and mismatch of communication and expectations. Caregiver involvement in monitoring care and disease was a potential mediator tool.

Fragmentation of dementia care services, lack of training for healthcare professionals and the dearth of information for caregivers means health care services are only partially fulfilling a support role. In turn, lack of support may be intensifying caregiver stress leading to worsening in their health and well-being; thus, potentially increasing the risk of institutionalisation of their care-recipient.

Read more at ScienceDaily

Full reference: Despina Laparidou et al. |Caregivers’ interactions with health care services – Mediator of stress or added strain? Experiences and perceptions of informal caregivers of people with dementia – A qualitative study | Dementia | First Published January 31, 2018

Impact of person-centred care training and person-centred activities on quality of life, agitation, and antipsychotic use in people with dementia living in nursing homes

Researchers from the University of Exeter in conjunction with King’s College London and Oxford Health NHS Foundation Trust aimed to  evaluate the efficacy of  person-centred care and psychosocial intervention incorporating an antipsychotic review on 800 patients with dementia. 

The study  tested the WHELD programme, (Improving Wellbeing and Health for People with Dementia), the largest non-pharmacological randomised control trial in people with dementia living in care homes to date.

  • The programme combined staff training, social interaction, and guidance on use of antipsychotic medications, in 69 UK care homes  in a 9-month clinical trial.
  • It demonstrates that care homes receiving the WHELD programme saw improvements in quality of life as well as other important symptoms including agitation, behaviour, and pain in people with dementia.
  • For the care homes in the study, the WHELD programme was also shown to be cost-effective

The key findings include:

  • The WHELD approach is beneficial for people with dementia living in care homes.
  • WHELD could be provided in an affordable way to improve the lives of these individuals, who often do not receive the care they need.
  • They also suggest suggest that the WHELD intervention confers benefits in terms of  quality of life (QoL), agitation, and neuropsychiatric symptoms, albeit with relatively small effect sizes,

The full text article can be accessed through the PLOS Medicine website

Download it from PLOS here 

The full story is at Science Daily